The number of RSV, flu and COVID-19 cases are increasing at this time and pediatric care is important now more than ever. One way to combat the season is to get vaccinated, according to Dr. John Christenson, associate medical director of infection prevention with Riley Children's Health.

"It’s going to be a very busy flu season," he noted. "We’re emphasizing that people get vaccinated" and added, "you want to get them now because you want to have your immunity by the time all these reach their peak."

The COVID-19 vaccine and flu shots are recommended and approved for all children ages 6 months and older. Infants under the age of six months can be protected from serious RSV infections if their mothers are vaccinated with the new RSV vaccine in their third trimester of pregnancy.

Need a flu shot for your child? Current patients can call their primary care office to learn more.

What should I do if I think my child is sick?

In addition to getting vaccinated, families can prevent respiratory illnesses by wearing a mask indoors, washing hands frequently, staying home when sick and covering coughs. Taking these safety measures can help families be prepared amidst these common illnesses.

If your child does get sick, whether respiratory or another illness, or is hurt, it’s important to know when to seek emergency care, urgent care, a primary care appointment with your pediatrician or a virtual visit.

For nonemergency situations, parents should call their pediatrician’s office to discuss the child’s needs. Pediatricians have the expertise to help decide the best care choice for your child.

What care should I seek for my child?

For help answering if your child’s need is a medical emergency or not, please review our symptom guide below. This guide helps families determine which care option may be appropriate for you:

• Primary Care
• Urgent Care (available at IU Health for children 3 months and up)
• Virtual Visit (available at IU Health for children 2 years and older)
• Emergency (Call 911 or get to an emergency department)

Symptom Guide for Children

• Allergic reaction where it's hard to breathe: Emergency
• Allergies: Primary care, urgent care or virtual visit
• Asthma attack - inhalers are working some: Primary care or urgent care
• Asthma attack - inhalers are not helping and difficulty breathing: Emergency
• Bladder infection (UTI): Primary care, urgent care or virtual visit
• Broken bones - suspected: Emergency
• Burns - minor: Primary care, urgent care or virtual visit
• Burns - severe: Emergency
• Chest pain: Primary care or emergency
• Constipation: Primary care or virtual visit
• Cough with stuffy or runny nose, like a cold: Primary care, urgent care or virtual visit
• Coughing or throwing up blood: Emergency
• COVID-19 test: Primary care or urgent care
  
• Cuts - minor: Primary care, urgent care or virtual visit
• Cuts that are deep or bleeding that won't stop: Emergency
• Dehydration - no tears, dry mouth, decreased urination: Emergency
• Dizziness or vertigo: Primary care, urgent care or virtual visit
• Ear pain or suspected infection: Primary care or urgent care
• Eye pain or suspected infection: Primary care, urgent care or virtual visit
• Fever - higher than 100.4°F and can't be controlled by medication: Primary care, urgent care or virtual visit
• Fever - higher than 100.4°F for at least 3 days: Primary care or emergency
• Fever - higher than 100.4°F and less than 3 months old: Emergency
• Flu-like symptoms, such as fever, achy body, cough: Primary care, urgent care or virtual visit
  
• Headache: Primary care, urgent care or virtual visit
• Headache - severe: Emergency
• Insect stings and bites: Primary care, urgent care or virtual visit
• Passing out or blacking out: Emergency
• Poisoning: Emergency
• Rashes and other minor skin problems: Primary care, urgent care or virtual visit
• Rashes - redness does not go away when skin is pulled tight: Emergency
• Seizures: Emergency
• Sinus infections: Primary care, urgent care or virtual visit
• Snake bites: Emergency
• Sore throat, suspected strep throat: Primary care, urgent care or virtual visit
• Sports physicals: Primary care or urgent care
• Sprains: Primary care, urgent care or virtual visit
  
• Stomach pain - minor, throwing up, loose stools: Primary care, urgent care or virtual visit
• Stomach pain - severe: Emergency
• Trauma or very bad injury: Emergency
• Trouble breathing: Emergency
• Vomiting: Primary care, urgent care or virtual visit

Always seek the appropriate care at a facility that works for you and your family.

Did you find this information helpful? View or download a PDF version of this guide below:

Sydney Deaver was only a year old when she first came to the big heart party at the NCAA Hall of Champions in Indianapolis.

At that time, she was just a few months removed from heart transplant surgery at 5 months old.

Now a feisty 5-year-old, she was back this weekend with her parents, David and Ashley, and dozens of other heart transplant recipients, to celebrate the holidays and the gift of life.

It’s been four years since the last Heart to Heart Christmas Party, organized by the transplant team at Riley Children’s Health. COVID-19 forced the cancelation of the celebration for several years.

“It’s amazing to be back again,” said pediatric cardiac transplant coordinator Debbie Murphy. “The NCAA is just so welcoming, and so many people are excited to be back and see each other.”

People like Leighton Akins, now 23, who has the double distinction of receiving two heart transplants.

Saturday’s party, championed and hosted by transplant cardiologist Dr. Robert Darragh, brought together about 150 people, representing 30 to 40 families.

There were many new faces at the party this year. Makayla Owens received her hero heart in 2020, so she had never been to the event. Dressed in her finest Christmas dress, the second-grader attended with her mom, Mariah Gavia-Locke, and posed for a photo with cardiologist Dr. John Parent.

“She is doing so well,” her mom said with pride.

The party, which was started by a couple of moms in a private home three-plus decades ago before expanding to a church, is the perfect opportunity for patients and families to connect with others who are on the same journey, said transplant coordinator Maegan Boehm.

“It’s important to see a room full of people who care about someone who has gone through this and shared the same hopes and fears,” she said.

While the kids and young adults were out exploring the Hall of Champions with NCAA staff, parents took time to share their personal stories, along with their gratitude for the Riley team.

Patrick and Samantha Kelly’s daughter, Sawyer, 9, was diagnosed with hypoplastic left heart syndrome and was transplanted when she was 9 months old.

“She spent just about her whole first year in the CVICU,” Samantha Kelly said. “She was very, very sick – a couple rounds of ECMO, a stroke, all the things. But now she is a happy, healthy third-grader. She rides horses, and she just started piano and choir.”

Considering how sick she was her first year, the Kellys say they have been very fortunate not to have had any major problems since transplant.

“We are incredibly grateful for the whole Riley team,” Samantha said. “They’ve been by our side through thick and thin. They’ve laughed with us, cried with us. They still celebrate all the milestones with us. We couldn’t be at a better place.”

Kevin and Trinity Ginther’s daughter, Hannah, is also 9 and was diagnosed with HLHS as well. She was transplanted at the age of 3½.

“We are blessed to be here,” her dad told the group. “Hannah’s been excited about this for weeks now. She got braces this week, and my wife cried. It’s those moments you sometimes take for granted, but we didn’t know if those moments were going to happen,” Ginther said.

And yet today, their daughter is thriving, he said.

“She is loving school and her friends. She is playing volleyball and loving that, and she will play basketball this year.”

It’s all because of generous donor families and the care and expertise of the Riley team, parents in the room agreed.

“You did such a good job taking care of our whole family,” Victoria Neumann told the Riley clinicians and support staff. “I know I can come to you with questions and celebrate the successes we have.”

Neumann’s daughter, Emma Sully, 11, received her new heart one year ago this month, and other transplant moms have helped her navigate the first year.

“I’m starting to feel like I have a handle on it,” Neumann said.

Learn more about becoming an organ donor.

The cardiovascular program at Riley Children’s Health is ranked among the best in the country by U.S. News & World Report.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

It was a casual conversation between neighbors that got the ball rolling.

Westfield resident Lindsey Kesler happened to mention to Jenny Belsky one day that she was a Riley kid, and that was how a reunion within the walls of Riley Children’s Health came to be.

That’s because outside of being a neighbor, Belsky is a physician and director of Riley’s pediatric lymphoma program, and she was curious to learn more.

Kesler, now married and the mother of two, was the first stem cell transplant patient cared for at Riley almost 30 years ago.

Diagnosed with aplastic anemia at 8 years old, she was one sick little girl.

Aplastic anemia is a rare but serious blood condition that occurs when a person’s bone marrow cannot make enough new blood cells for the body to work normally. Left untreated, the risk of death is as high as 70% in the first year.

The diagnosis rocked the world of Kesler's parents, Carla and Myron Earhart, who also had a younger daughter, Allison.

The best hope for a cure (then and now) was a stem cell transplant, Riley doctors told them, but it was a relatively new form of treatment and Riley’s program was still being developed.

They took the doctors’ advice and coordinated with a hospital in Kentucky to get the transplant in February 1994, then returned to Riley for months of intense treatment and years of follow-up care.

Dr. Kent Robertson and nurse practitioner Kris Kauffman were part of the team caring for Earhart, and both still work at Riley.

To see her again after so many years was a thrill, they said as they met with the entire family earlier this month in the lobby of the Maternity Tower.

“You’re all grown up,” Dr. Robertson said as he and Kesler hugged.

“I’m actually getting old,” she responded with a laugh.

Neither was a given when she was a little girl.

“This is the door we used to come in (before the Maternity Tower was built),” she said. “We would go to clinic B, and that’s where I had my blood transfusions,” she recalled. “We used to call it the confusion room instead of infusion room.”

Kauffman, who started at Riley in 1986 and joined the oncology team as a nurse practitioner in 1989, remembers that time well.

“She was my baby. I took care of her,” Kauffman said. “She had a really rough post-transplant course.”

“Standing up a stem cell transplant unit was a big deal then, and it looks radically different today,” Dr. Robertson said.

Kesler’s parents remember how hard it was to see their little girl forced to live in a “bubble” in the hospital when her immune system was at its weakest. They would put on a sterile gown, mask and gloves before reaching in through little holes in the plastic shield that surrounded their daughter just to touch her hand.

Dr. Robertson remembers.

“We would examine patients with gloves through the holes (of the plastic screen) and a stethoscope that was attached to the bubble because there was no immune system,” he said.

“Today, we have these HEPA-filtered rooms that are rich in purified air and all positive pressure, so they really keep a clean environment,” he added. “We’ve learned a lot more about risks for infections and the things we can do to take care of that. It’s made a huge difference.”

Allison Earhart, who at age 7 was her older sister’s bone marrow donor, didn’t understand what was happening at the time but does recall that she got $10 out of the deal, along with a sore back.

“I think I used the money to buy candy,” she laughed.

The girls’ parents can also laugh about the deal they struck now, but at the time, they knew their youngest child might just be able to save her sister’s life.

“We tested everyone in the family,” Carla Earhart said. “Allison was a 5 out of 6 match.”

It was just three weeks from diagnosis at Riley to transplant in Kentucky, said Dr. Robertson, who came to Riley in 1993 from Seattle.

“In those days, you scooted patients into transplant as quickly as you could because the risk was that they would get an infection they couldn’t fight,” he said.

At the time, the odds of success weren’t good, Dr. Robertson said, “but if you don’t do something, ultimately you run out of gas.”

Today’s treatments have improved dramatically, he added, “but many of these kids will still go on to have stem cell transplants.”

Now, Riley does 40 to 50 stem cell transplants a year, he said, treating everything from cancer to sickle cell disease.

Despite how far the transplant program has come in three decades, “we’re always asking, how can we do it better,” Dr. Robertson said, “with a critical eye to the functioning of the unit, the personnel and the care of the patients. They will ultimately tell you if you’re doing the right things.”

It’s still intensive therapy that comes with risks, but outcomes are much better today, he said.

As a child, of course, Kesler didn’t realize how sick she was.

“I was 100 percent naïve because of these two,” she said, pointing to her parents. “I had no clue what the stakes were.”

Even when she was granted a trip to Disney World by the Indiana Children's Wish Fund when she was very sick, it didn’t sink in.

“I didn’t know what a Wish trip even meant until after college,” she said. “I thought it was just because I’d done an awesome job in the hospital.”

She and her family are grateful to Dr. Belsky for making the pre-Thanksgiving reunion at Riley possible.

“My heart is at Riley, of course,” Kesler said. “I just wanted to share our story. We spent so much time here, and my dad even quit his job to take care of me.”

She and her sister say they have worked through any sibling rivalry issues they were once too young to understand. The two are very close now.

But Allison Earhart jokes that if asked to donate bone marrow to her sister again, she might double the price to $20.

Her one-month-old sister’s bassinet is set up right between Nova’s bed and the pull-out couch where mom, Carla, sleeps.

At one point, both girls were Riley patients. Nova is receiving treatment for leukemia. Octavia was LifeLined to Riley soon after her birth.

Octavia required a stay in the Riley NICU. Carla and her husband spent time going between the NICU and the cancer unit to visit both their daughters.

Now, Carla and baby Octavia can often be seen hanging out in the playroom with big sister Nova.

Nova is going through chemotherapy. The plan is for her to receive a stem cell transplant next year.

Overall, Riley Children’s is home to an array of pediatric excellence, providing skilled expertise to children with the most complex diagnoses. Notably, we’re recognized for multiple achievements:

• Seventh-ranked children’s hospital in the nation for National Institutes of Health (NIH) research funding
• A designated Platinum Center of Excellence by the Extracorporeal Life Support Organization
• Home to a Level IV NICU that is ranked eighth out of 46 U.S. centers for the number of comorbidities present on admission

Specifically, within our renowned cardiology and heart surgery program, our expert physicians are consistently elevating care for patients with cardiac conditions. Distinctions include:

• The only pediatric and adult congenital transplant program in Indiana, as accredited by the Adult Congenital Heart Association
• National leader in patient outcomes with mortality rates below the benchmark
• One of the few programs in the nation capable of implanting total artificial hearts in children

Additionally, our world-class pediatric pulmonology department offers excelled treatment for patients with respiratory and sleep conditions. Key highlights include:

• One of the largest cystic fibrosis programs in the nation and the only program in Indiana accredited by the Cystic Fibrosis Foundation
• Home to the nation’s only multidisciplinary program for patients with Alström syndrome
• One of nine pediatric centers in the nation to be accredited as a Pulmonary Hypertension Center of Comprehensive Care

Furthermore, find additional information about our other leading specialties:

• Gastroenterology & G.I. Surgery: Use of novel technologies including IB stim, EndoFLIP, transnasal esophagoscopy and biofeedback
• Nephrology: 12th pediatric center in the U.S. to launch aquapheresis, allowing for continuous renal replacement therapy in smaller patients
• Urology: One of seven Congenital Adrenal Hyperplasia (CAH) Comprehensive Care Centers in the U.S. (designed by the CARES Foundation)

To learn more, view the full annual report.

Brian McFerron, MD, gastroenterologist at Riley Children’s and director of the Fellowship Training Program for the Division of Pediatric Gastroenterology, Hepatology and Nutrition at Indiana University School of Medicine, is a standout on the education team who is the recent Teri Li Young Educator Award recipient. The award, which honors individuals in the first phase of their professional career who have advanced the pediatric gastroenterology field through education scholarship, is granted each year through the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).

“He is passionate in every setting–when giving praise, when helping someone to discover areas of improvement, or even in a routine meeting,” Bobbi Byrne, MD said, vice chair of pediatric education and professor of clinical pediatrics at IU School of Medicine. “This award recognizes that Dr. McFerron is an outstanding educator on a national level.”

In addition, Jean P. Molleston, MD, division chief of pediatric gastroenterology at Riley Children’s, is another rewarded recipient, who recently earned the NASPGHAN Master Educator Award, a prestigious honor recognizing individuals for their educational work on a national or international basis. Known for multiple contributions to advancing pediatric academics, one vital practice she has evolved is the development of a new gastroenterology and nutrition medical student course, where she shifted from the traditional lecture-based learning to problem-based and case-based learning in 2019. As well, she established the transplant hepatology fellowship at Riley Children’s, where she previously served as the primary mentor to aspiring gastroenterologists.

“Dr. Molleston has always placed an emphasis on education throughout her career,” Charles Vanderpool, MD said, pediatric gastroenterologist at Riley Children’s. “Even while a resident at Washington University School of Medicine, she was voted as the best teacher by faculty and members of the residency house staff.”

Alongside Dr. McFerron and Dr. Molleston, gastroenterologists at Riley Children’s and their multidisciplined team of specialists are honored for additional recognitions, including:

• Elaine A. Gilbert, PsyD, HSPP, pediatric psychologist at Riley Children’s, earns a teaching award for her work with the psychology internship and training program. Educating about GI psychology, she is one of to two pediatric psychologists at Riley Children’s who specializes in the rare area of expertise.
• The study, “Biomarkers of Fibrosis and Portal Hypertension of Fontan-Associated Liver Disease in Children and Adults,” stewarded by Chaowapong Jarasvaraparn, MD, gastroenterologist at Riley Children’s, is named best abstract at the 2023 International Fontain Kreutzer Symposium.

Overall, our GI specialists are distinguished leaders, providing highly skilled care for patients with conditions related to obesity, liver disease and more. Learn more in the annual report.

Few injuries are scarier than a blow to young child’s head. As your child develops, their motor skills and sense of balance are still stabilizing as they learn to navigate in the world, which can result in bumps and bruises. Fortunately, most childhood head injuries look worse than they actually are, assures Dr. Alyssa Swick, pediatrician at Riley Children’s Health.

“The risk of an injury like a skull fracture is quite low in children, about 1%, after a minor fall, so most of these injuries can be managed at home,” Dr. Swick said. “However, this applies to children who are otherwise healthy. If your child has a prior head injury or surgery, or if they have a disorder that causes them to bleed or bruise easily, they should always be evaluated by medical personnel after a significant injury."

Assessing head injuries

The biomechanics of head injuries differ by age. Before kids are walking or cruising, a head injury is most likely caused by a fall from a changing table, for example. A toddler or older child with a head injury probably took a tumble, ran into something or was hit by a heavy object. Be prepared that some head injuries may seem worse because they tend to bleed a lot.

“There are a lot of blood vessels in the scalp, so even a small scrape can lead to a frightening amount of blood,” Dr. Swick said. “Still, if your child seems to be bleeding profusely, wipe the blood away, and if it the edges of the skin are still gaping apart, you should seek physician’s care to see if stapling or stitches are needed.”

A minor head injury can cause a bump, or a “goose egg,” which is a prominent area of swelling on the scalp that will typically improve on its own. You can apply an ice pack and offer your child over-the-counter pain medication like ibuprofen.

When a head injury is serious

If the swelling or bleeding continues, or your child is acting or behaving strangely, it’s time to consider emergency care. You might also call your primary care physician if your child can’t verbalize how they feel.

“If your child is under the age of two and can’t communicate as easily, it’s always good to have an evaluation by your physician. You may not need to go to the ER. The pediatrician’s office can help you triage these concerns,” Dr. Swick said. “Ultimately, you need to trust your instincts. If you feel like something’s wrong with your child, it’s never the wrong answer to check in with your pediatrician to make sure the injury they’ve received is nothing serious.”

However, if you’re concerned that someone may have purposefully injured your child, it’s important to seek care immediately.

“If you suspect your baby has been shaken or your child has been intentionally injured, these concerns should be evaluated immediately in either the ER or your pediatrician’s office—these concerns should not be monitored at home," Dr. Swick said.

While it’s very common for kids to get their ears pierced, it’s not always a simple process. It’s important to make sure the procedure is done safely, with sterile equipment, and that you know how to properly care for the new piercings at home. To avoid infections, follow these ear-piercing safety tips from Dr. Alyssa Swick, a pediatrician at Riley Children’s Health.

When to undergo ear piercing

While the family’s traditions and culture may influence the timing of piercing a child’s ears, the American Academy of Pediatrics (AAP) typically recommends that parents wait until children are able to manage and help care for the piercing on their own. Infections from ear piercings can lead to hospitalization of newborns, so physicians often recommend waiting at least a couple months.

“We recognize that many families are going to pierce their child’s ears sooner for cultural reasons, so in these cases, it’s best wait until at least two months, once the babies have their first routine set of vaccinations, to reduce the risk of infection,” Dr. Swick said.

Make sure the piercer uses sterile procedures

Some pediatricians’ offices do piercings, in which case you should feel confident the environment is sterile and safe. Dr. Swick recommends the needle piercing technique over the use of gun piercing for children because it tends to reduce the risk of infection and scarring. Needle piercings are typically offered at tattoo shops. Be sure to select a reputable place with sterile practices. If you are unsure, ask about their sterilization procedures. While regulations and licensing standards vary depending on the state, the person performing the piercing should be well trained, wear a new pair of disposable gloves and use equipment that has been thoroughly sterilized.

Choose the right metals and closure

Choose earrings made of hypoallergenic materials, such as sterling silver and 14-, 18- or 24-karat gold. These types of metals are not likely to cause an allergic reaction. Note that nickel frequently causes allergic reactions, so steer clear of nickel during the piercing process (ask the piercer if you are unsure).

“For young children, you also may want to select an earring with a screw locking mechanism that reduces the risk of the earring back coming off and becoming a choking hazard,” Dr. Swick said.

Reduce risk of infection

Ask the piercer what to expect after the piercings and how to care for the area. The skin around the piercings might be swollen, sensitive or red immediately afterward. To encourage proper healing and avoid infection, follow these recommendations:

• Avoid touching the new piercings, except when cleaning them.
• Always wash your hands with soap and warm water before touching the ears or earrings.
• Clean the entire area surrounding the piercings (front and back) daily with a saline solution or gentle soap. During each of these cleanings, make sure the earring backing is secure. Avoid hydrogen peroxide or soaps with strong scents or antibacterial components, as these may damage the skin healing around the piercing.
• Your piercer may recommend rotating the earring daily. Follow the instructions based on the type of earring you are using.
• Be careful not to pull or push on the piercings when brushing hair, talking on the phone or wearing headphones. This will prevent a tear.
• Have your child avoid swimming in pools, hot tubs, lakes and oceans while the piercings are healing because this could increase the risk of infection.

Keep earrings in for four to six weeks

Do not remove or change the earrings for at least four to six weeks. Continue regular cleanings during this period to reduce the risk of infection.

“This is a great opportunity to teach older kids responsibility in caring for their piercings, but you’ll still want to check on their ears to make sure that it’s healing properly,” Dr. Swick said. “Don’t leave this responsibility entirely up to them.”

It can take several months for piercings to fully heal. Once you’re able to change the earrings, you’ll likely need to use only post earrings for six months after the piercing to prevent the holes from closing.

Monitor for piercing problems

One of the biggest issues with piercings in young children is that they can yank out the piercing and rip the earlobe, preventing it from healing. A doctor may administer topical or oral antibiotics to heal the tear.

“About 35% of ear piercings result in a complication of some kind, so it’s likely you’ll need some sort of medical intervention,” Dr. Swick said. “Sometimes the back of earring can get stuck or embedded in the skin of the ear, which could also become a problem.”

If you notice an embedded earring back, pain, redness, puss or swelling that lasts longer than 24 hours after the piercing, contact your physician for an exam and treatment.

Like you, your child experiences natural ebbs and flows in their appetite. One day, they’re scarfing down everything in sight, the next they’re barely making a dent in dinner. But how can you tell whether it’s just a normal part of growing up or cause for concern? Dr. Alyssa Swick, pediatrician at Riley Children’s Health, offers advice for how to approach your child’s shifting appetite.

When your child has a decreased appetite or “picky” eating

It can be difficult to watch your child push food around on the plate and barely put any into their mouth, but keep in mind there are several possible reasons for a temporary decline in appetite. Illness, congestion and constipation can play a role.

“If they’re not eating, I usually tell families that we expect children to eat fewer solid foods when they’re feeling sick,” Dr. Swick said. “The important thing is making sure they’re drinking enough fluids and having at least three voids (urinations) per day and staying hydrated. It’s okay if kids have several days of not eating well during an illness.”

Developmental milestones can also play a role in a less-than-ravenous appetite. When babies begin walking or running, for example, they often prefer playing and moving around to sitting down and eating. Some children will eat less every time they experience a developmental leap, especially in the toddler years. “Sometimes toddlers avoid meal times as a way to assert their independence and be in control of their diet,” Dr. Swick added.

To encourage your child to eat more at mealtime, Dr. Swick suggests the following:

• Be sure to include a small portion of at least one thing you can reasonably expect your child to eat at meal time.
• Keep offering foods they don’t prefer. “It takes 12 to 17 tastes of a food for a child to develop a preference for that food, so persistence with healthy, less preferable choices is important,” Dr. Swick said.
• Ensure all members of the family are seated at the table for the entire meal. “We know that family meal time reduces things like risks of depression and obesity, and just one meal a day together improves overall quality of life for children and increases their chances of graduating high school,” Dr. Swick said. “It’s also a great opportunity for older kids to talk about their day and check in on how they’re doing academically and socially. It helps you stay connected as a family.”

• Keep books, toys and other distractions away from the table so everyone can focus on the meal.

• Be clear on meal and snack times, even if your kid chooses to skip. Offer three meals a day and two healthy snacks, depending on your child’s age. “As long as you have a scheduled meal time, and your child knows when the next opportunity to eat is, it’s ok for them to choose not to participate in everything that you offer at a certain meal time,” Dr. Swick said. “But you shouldn’t offer additional food outside of those scheduled meals and healthy snacks.”

In general, try to make meal time an enjoyable event, and not one your child dreads.

“As parents, it’s your job to offer healthy balanced food, and it’s your child job to decide what they’re hungry for and what goes into their belly,” Dr. Swick said. “We recommend focusing on making meal times pleasurable, rather than a high-pressure experience. As long as your child is growing appropriately and staying hydrated, it’s okay for you to offer the food and let your child choose what goes into their body.”

When your child has an increased appetite

A growth spurt could be why your kid is asking for seconds lately. These bursts of height or weight (or both) can make children extra hungry and crankier than normal.

If your child’s appetite has increased, a good rule of thumb is to focus on offering healthy choices like fruits, vegetables and healthy fats and proteins instead of offering processed snacks and junk food. While it’s normal for a child to eat more during certain periods of growth, it’s important to make sure parents are offering nourishing choices to build healthy habits and development.

“If you feel your child’s appetite has increased exponentially, beyond what you expect to be normal, talk to your pediatrician to make sure there aren’t other, more worrisome causes,” Dr. Swick said. “And any time you notice rapid weight gain, it’s time to talk to your primary care physician.”

When to call the pediatrician

Of course, sometimes a change in appetite is a sign of something more serious. Call your pediatrician if your child has any of the following symptoms:

• Abdominal pain with eating
• Weight loss or poor weight gain
• Concerns for hydration, such as a child who is peeing fewer than three times a day
• Vomiting, shortness of breath, coughing, facial swelling or rash after eating. These could be signs of an allergic reaction.

Learn more about the value of family dinners by exploring the available research.

A. Paredes and K. Shelnutt, Raising Healthy Children: The Importance of Family Meals (FCS8925), Department of Family, Youth and Community Sciences (06/2010).

J. Lyttle and E. Baugh, The Importance of Family Dinners (FCS2286), Department of Family, Youth and Community Sciences (Archived).

William Flannery has an alter ego that few people know about, but he is flying high over Riley Hospital for Children.

Eight-year-old William – aka Will Fire – is a second-grader from Muncie who has been given superhero status by The Superhero Project, a nonprofit whose mission is to support kids with life-threatening illnesses.

In real life, William is a little boy who wants nothing more than to be home building LEGO kits and playing with his three older brothers and cousins, but he is also a warrior.

He is fighting a malignant central nervous system embryonal tumor, diagnosed earlier this year. William underwent surgery by pediatric neurosurgeon Dr. Jignesh Tailor to remove the tumor at Riley in January, followed by weeks of proton radiation and months of chemotherapy.

His treatment journey continues, but he and his parents, Ryan and Ashley, have been inspired by the work of others to bring William’s superhero dream to life.

As part of a collaborative storytelling mission, William was interviewed over Zoom to find out what kind of superhero he would like to be – from his hair down to his boots – and what superpower he would wish to have.

William, who particularly likes Iron Man among today’s superheroes, chose healing for his superpower because he wants to help cure kids who are sick like he is, he told his mom.

After the interview, the family received a special delivery to their home, a package that included a watercolor picture and a glossy poster of Will Fire, complete with a medicine bag filled with shots of healing power, fire-propelled boots and his trusty sidekick, Samuel the turtle.

When asked where his superhero character should fly, his parents assumed he would pick Moab, Utah, his favorite place on Earth. But he surprised them.

“He chose Riley,” his mom said as she sat in the playroom on the fifth floor of Riley recounting the family’s journey over the past several months.

Designed by Erin O’Leary Brown, the poster includes a narrative on the back that incorporates William’s answers to questions posed by The Superhero Project.

“Will Fire is fierce! This brave and bold superhero is on a mission to cure all diseases and make every child healthy,” it reads in part. “He carries all the tools he needs for research and treatment in his doctor’s bag, from chemicals and beakers to a stethoscope and reflex hammer. … He journeys from Riley Children’s Health around the world helping people, flying at lightning speed with his amazing rocket shoes.”

In a note to William, the artist writes, “I hope that you and your family like the poster design. I also hope when you look at it, it reminds you that just like the people standing by Riley Hospital for Children in this picture, we are all cheering you on!”

When Ashley took the poster to have it framed, it was returned later with a tiny note tucked inside: “Be safe out there. Your superhero secret is safe with me.”

Gestures of kindness like that from strangers and friends alike help lift Ryan and Ashley when worry threatens to rob them of joy.

During an appointment with oncologist Dr. Daniel Runco, the family talked about how they will remember the year 2023.

William had the best answer of all, his mom said.

“2023 is the year of Will Fire,” he told them.

An urgent call to action in the name of Indiana’s children found a receptive audience at Gainbridge Fieldhouse on Monday night.

In an arena better known for Indiana Pacers games and concerts, a crowd of 650 came to watch the Indianapolis premiere of the mental health documentary “Racing to Respond.”

The 45-minute film, developed by Riley Children’s Health, tells the deeply personal stories of two Hoosier families who have experienced the youth mental health crisis in Indiana.

Teenager Jacqueline Scott and her mother, Shawn, talk about Jacqueline’s mental health struggles, including incidents of self-harm and thoughts of suicide, in the film.

Randy and Angie Eugenio share their heartbreak over the loss of their son, Tate, to suicide two years ago.

“He was a great kid, he was successful, he was well-supported, he was loved, and he still struggled,” Angie Eugenio says through tears in the film.

“You just want to be with your baby. I just want to hold him.”

Shocking statistics also tell the story. Suicide is the second-leading cause of death among adolescents in Indiana, according to the Indiana Center for Prevention of Youth Abuse and Suicide. That same group reports that 22% of high school-age girls and 12% of high school-age boys seriously considered attempting suicide in the past year.

The alarming rise in mental health crises is further complicated by a lack of access to quality care, said Riley President Gil Peri, who helped galvanize support around the state for a strategic plan to help Indiana’s children.

That plan includes early intervention, something Riley Children’s Health is launching now with support from a state grant and a philanthropic commitment from the Riley Children’s Foundation.

It involves embedding mental health services in primary care offices, making access to care available in convenient and trusted locations as soon as the need is identified.

Further investments would develop more school-based services, parent support programs and enhanced training on effective, evidence-based interventions.

Additionally, core strategies identified in the statewide plan include improved access to outpatient mental health services; safe interventions for kids in crisis; and timely, effective inpatient care when appropriate.

“There are things we see every day that we just ignore,” University of Southern Indiana President Ronald Rochon says in the film. “People in crisis no longer can wait for you to be attentive immediately to this issue. Families want this, families need it, families deserve it.”

Indiana Lt. Gov. Suzanne Crouch, an outspoken advocate for improved mental health services in the state, thanked Riley for its leadership in bringing community partners together to focus on the issue. During her remarks, she asked the audience how many have dealt with mental illness or addiction or have a loved one who has suffered because of it.

Nearly everyone raised their hand.

“Look around the room,” she said. “It’s all of us. That’s why we’re here.”

For 100 years, Riley has been the state’s leader in caring for kids’ physical health, but now it is taking on the challenge of improving mental health care as well, along with more than 200 partners (clinicians, educators, legislators, business and community leaders, families) around the state. It cannot do it alone.

“We are committed to working with the state and all the stakeholders to make a difference,” Peri told the group gathered at Gainbridge, the last scheduled stop on a multi-city tour of “Racing to Respond.”

“We have to realize that we’re at a point where we need to do something different,” Peri said. “If in five years, we are sitting at the same place we are today, we have not taken advantage of a very important moment.”

Following the film, a panel discussion brought forth both personal and professional perspectives on the issue and thoughts on how to move forward. Panelists included the Scotts, the Eugenios, Riley behavioral health specialist and chair of the Department of Psychiatry at IU School of Medicine Dr. Leslie Hulvershorn, Indiana Sen. Michael Crider and clinical psychologist Dr. Michele Thorne.

Sen. Crider said he is encouraged to see alignment on strategies to improve mental health care among the business community, faith community, education leaders and healthcare providers.

“The thing that is most encouraging to me is the willingness to openly discuss the fact that generally everybody is dealing with something and if that stigma can begin to go away and folks can feel comfortable reaching out … I recognize the value of the folks who are trained to provide this level of care,” he said, adding that sustainable funding must be part of any statewide initiative.

Improved mental health care requires investment in training and delivering appropriate care, Dr. Hulvershorn and Dr. Thorne agreed, adding that a better system needs to be established to encourage more providers to seek high-level training in the mental health field.

Angie Eugenio said despite her family’s best efforts, they were not able to get their son the help he so desperately needed, but the IU Health physical therapist has channeled her grief into purpose by advocating for improved mental health care for all children.

“We wanted to be there to help (Tate), and we just didn’t know what to do,” she said. “There are resources out there to educate yourself (NAMI, American Foundation for Suicide Prevention), but don’t hesitate to trust your gut. Whether you’re a parent or a friend, if you see something that doesn’t feel right, ask.”

To those who might be struggling with their own mental health right now, she had this message: “You’re not alone. People care. People want to help. It’s OK to ask for help. It’s OK to not be OK. You are loved.”

“It’s OK to be open about it,” agreed her husband. “That’s what we’ve been trying to do. That’s why we’re here … to try to prevent suicide from happening.”

Shawn Scott also encouraged openness, even when it hurts.

“I know a lot of kids don’t share with friends or family what they’re going through because they’re so afraid to hurt them or scare them. It’s OK to hurt us and scare us,” she said. “We love you. We want to be with you through the good and the bad and everything in between.”

Riley chief physician executive Dr. Elaine Cox closed out the evening with a call to action for the crowd, citing an “incredible sense of urgency.”

With suicide as a leading cause of death for Hoosier youth, the race to respond is on, she said, inviting the audience to join in the fight by taking a closer look at the strategic plan distributed at the event and deciding how best to become involved. In addition, she encouraged all to sign up to become a Riley Child Health Champion.

“The only requirement for membership is that you care about kids.” With the mental health crisis looming large, “children need all the champions they can get,” she said. “We hope that you will lean in, sign up and join us in our number one priority, which is ending this crisis and saving children.”

Learn more at rileychildrens.org/champions.

If you or someone you know needs help, call the National Suicide Prevention Lifeline at 988.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

“I want this epidemic of suicide to stop” - A Zionsville family shares their painful story in the Riley documentary “Racing to Respond.” Their goal is to spare others the grief they live with every day.

Normally, she’s part of the stork team, which is present for high-risk deliveries. Her focus is to ensure babies are breathing.

The team that she works with was present for her own delivery due to complications at the end of her last pregnancy.

Rachel faced concerns about preeclampsia and had to be induced when she was 35 weeks and six days pregnant. Her son required immediate respiratory support when he was born. The stork team jumped into action.

Rachel's son required a NICU stay. She says she is very grateful to the entire NICU team and the respiratory therapists who were able to help her son in those crucial moments.

For 19 months, she waited.

And waited and waited.

Finally, after 579 days on the Heart Center at Riley Children’s Health, 10-year-old Ava Graham -- #AmazingAva – went home Monday with a new heart and a new life waiting to unfold.

Dozens of Riley team members, medical students, friends and family lined the halls to celebrate Ava as she walked out of her hospital room for the last time.

With “Bang” playing in the background and the crowd shaking maracas, hand clappers and pom poms, Ava walked with her parents, Jack and Jami, to the elevator before one last goodbye.

For the Grahams, the last few hours waiting to be officially discharged might have been among the hardest in this long, arduous journey.

“I’m ready to get out of here, ready to go home and start a new life,” Jack said as he finished packing up his daughter’s room, including her beloved dinosaurs and dragons, monster slippers, posters, artwork, toys, blankets and iPad.

“It’s overwhelming,” Jami said, admitting to some nerves even as she looked forward to spending their first night at home together since April 2022. She planned to make spaghetti for dinner and let Ava enjoy her redecorated bedroom and reunite with her two kitties.

Ava was born with hypoplastic left heart syndrome and underwent multiple heart surgeries. When doctors determined she needed a heart transplant, her care was moved to Riley, where she waited longer than anyone in the unit’s history for a hero heart.

Transplant cardiologist Dr. Robert Darragh and transplant coordinator Debbie Murphy have been by Ava’s side since that first day, working behind the scenes to match Ava with a heart, a challenge made more difficult by Ava’s high level of antibodies.

“At one point, her antibodies were at 98 percent, which means that she could only match with 2 percent of the population,” Jami said. “It was like finding a needle in a haystack.”

The transplant team had multiple heart offers for Ava last year, but none was a good enough match. When those offers began to dry up, the Grahams wondered if they’d ever be able to take their little girl home.

But then they got that magical call on the last weekend in October.

Day 555. A heart was on its way.

“It was very surreal when we got word,” Jami said. “It had been so long we weren’t sure it was ever going to happen.”

With the clarity of someone now on the other side of transplant, Jami said she learned you have to trust the process.

“You don’t have any control. You have to take it day by day.”

Even when it’s 555 days.

So many days and weeks and months of waiting before getting word that another family has made the selfless decision to donate the heart of their loved one and that heart is perfect for a little girl in Indiana.

“I feel a tremendous amount of relief for them,” Murphy said as she and others signed Ava’s heart pillow while waiting for the farewell parade to start. “Their long wait is over, and their new life is starting. It’s a blessing that she got this heart, and it’s a good one.”

Dr. Mark Turrentine procured the donor heart, while Dr. Mark Rodefeld and an operating room team of experts completed the transplant surgery Oct. 28.

Five days later, Ava was walking the hallways of the CVICU, supported by IVs and multiple team members, as she did a little post-Halloween trick-or-treating on the unit.

That’s the kind of spirit that endeared her to nurse Tyler Fromer, who took care of her often during her first year at Riley. Fromer, who now works as a traveling nurse, came in on his day off Monday to congratulate her.

“You look so pink,” he said as she greeted him with a hug. “I heard you were leaving, and I had to come by.”

Also on hand to see her off was Jenna Yarnell, manager of Child Life Services.

“I’ve worked at Riley for over 11 years, many of those on the Heart Center, and I’ve never worked with a patient who’s been here as long as Ava,” she said. “So to see her finally going home is amazing.”

It’s hard to live in a hospital for 19 months, but Ava has been a rock star, she said.

“I think we’ve all learned a lot from her about what it’s like to persevere and show everyone what you’re made of. The psychosocial team (Ava calls them her dragon slayers) has found ways to support her that we’ve never done before. We’ve learned a lot about what it looks like to support a child who’s living in the hospital … and meeting her where she was each day.”

And one more thing, a nod to one of Ava’s passions, Yarnell said.

“We learned a lot about dinosaurs and dragons along the way.”

Riley Children’s Health is ranked among the best in the nation for its cardiology and heart surgery programs.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

Fourth-grader marks 500 days waiting for heart transplant - Ava Graham has been inpatient at Riley for 16 months as doctors and transplant coordinators work to match her with the gift of life.

Birthday bash celebrates girl waiting for “hero heart” - Nine-year-old Ava is surrounded by those who hold her close in their own hearts as she marks five months on the transplant list.

Amazing Ava waits for a new heart - The girl with her own hashtag is making herself at home in the hospital for as long as it takes.

She was diagnosed with a desmoid tumor. Mackenzie was admitted to Riley Children’s Health. She says she was filled with anxiety over what her future would hold.

Mackenzie recalls how two of her Riley nurses made a huge impact on her during her long stay. They offered her support and encouraged her to continue using music as a source of comfort.

One of the Riley music therapists also formed a strong connection with Mackenzie.

These individuals inspired Mackenzie to continue writing songs during her hospital stay.

The doctors at Riley were able to remove the entire tumor. Now, she’s gone through follow up scans and been declared tumor-free.

Mackenzie is enjoying this new chapter and focusing on pursuing a career in the music industry. She was even chosen for a three-month internship with Taylor Swift’s former manager.

Mason and Beckett Chaney deal with a life-threatening disease every day, but you wouldn’t know it to look at them or talk to them.

They share jokes, finish the other’s sentences and always watch out for each other.

The brothers have type 1 diabetes, once called juvenile diabetes, a chronic condition in which the pancreas produces little or no insulin. Without insulin, they can suffer diabetic ketoacidosis, which can be deadly if left untreated.

The disease, believed to be caused by an autoimmune reaction, often strikes with little obvious warning. It slowly destroys the cells in the pancreas that make insulin, a process that can go on for months or years before symptoms appear.

It might seem like a raw deal that two of Bryan and Katie Chaney’s four kids have the condition, but they are learning to manage it with the help of “smart technology” that takes some of the worry out of their days and nights.

Gone are the days when Mason, 13, and Beckett, 7, had to prick their fingers to check their blood sugar levels, then give themselves shots of insulin when needed.

Now, they rely on electronic devices that constantly “talk” to each other to make sure their average A1C stays in range, avoiding dangerous drops or spikes that can compromise their health.

This “closed-loop” insulin system involves a sensor placed under the skin, which tells an insulin pump how much insulin to deliver throughout the day. Katie can view her sons’ glucose levels and receive notifications on her smartphone, as well as input the amount of carbohydrates being eaten at meals.

“We’ve adjusted, but it’s not easy,” the Richmond mom said. “I’m committed to making sure they feel like kids first. I want it to operate in the background of their lives.”

It was Beckett who was diagnosed first – at just 15 months old. His mom noticed he was becoming lethargic, not eating well, but drinking a lot. His diapers were soaked. After a trip to the pediatrician and lab tests, the doctor called within an hour to tell Katie to get her son to the hospital immediately. His blood sugar was off the charts.

She took him first to a Richmond hospital, but he was quickly transported by ambulance to Riley, where a pediatric team of specialists was waiting to treat him.

“That whole period is really a blur,” said Katie, who was pregnant with her fourth child at the time. “It was traumatic for me as a mother, and I remember just feeling really sad. It felt very heavy in the beginning.”

Three months later, Katie delivered her youngest child, now 5, and three months after that, her oldest, Mason, was also diagnosed with type 1 diabetes. He was 8 at the time. Neither of the couple’s other two children has the disease.

“By the time Mason was diagnosed, I had adjusted a little bit, but my daughter was just 3 months old. It was a lot. People tried to tell me it was going to be OK and that it was manageable, but I almost couldn’t believe them. It just felt impossible.”

With the help of the boys’ Riley team and the support of family, friends and school staff, the Chaneys have learned to manage this condition, but advances in technology definitely make it easier.

Mason and Beckett are longtime patients of Dr. Tamara Hannon, endocrinologist and medical director of the pediatric diabetes clinic at Riley Children’s Health, which sees 1,800 diabetes patients each year.

She describes the evolving technology as a gamechanger for families and patients.

“It’s huge,” she said during an appointment with both boys last week. “I’m just thrilled that kids are able to use these devices, and it is improving their diabetes outcomes and also giving their families a little peace of mind.”

The technology means nights are easier for everyone in the family. Dips in blood sugar are common for children while sleeping and can become life-threatening, resulting in seizures or even loss of consciousness. The closed-loop insulin system recognizes when a child is experiencing a dip in blood sugar and automatically administers insulin to an appropriate level.

“Nighttime was hard,” Katie said. “We used to have a lot of disruptions, lots of beeping alarms. This has helped everyone. It has decreased the worry and anxiety, and it allows other people to feel comfortable taking care of them – that’s always been a struggle. These tools are a little more user-friendly, and the boys are older now, so they can do most of it themselves.”

Mason, a seventh-grader, can tell you how his continuous glucose monitor, sensor, pump and handheld remote device all work together to keep him healthy, even while he participates in after-school sports, including wrestling, baseball and cross country.

Dr. Hannon congratulates the teen on his diligence, noting that the reports she receives show he is managing the system well. His A1C reading at last week’s appointment was 6.3, which is right on target, she said.

“Do you know why we care about your blood sugar being in target range? Number one, so that you feel good, and number two, so that we can keep your blood vessels healthy.”

Mason understands all that, but for him, the system is better in a big way: “It’s way better than the shots,” he said.

“Even though these pumps are helpful, they are very sophisticated little computers,” Dr. Hannon said as she looked at a handheld device the size of a cellphone. “But as kids grow up with these systems, they become the experts. They live it,” she said.

While she looks at the readings on paper, that doesn’t show her what happens every day, she said. It just shows his blood sugar.

“He’s a whole person, not just a blood sugar. When he eats, he has to tell the pump to give him more insulin. He wears a device on his stomach that continuously infuses insulin underneath his skin. And that computer he has directs that device.”

The amount of insulin the boys give themselves is directly proportional to the carbohydrates they have in their diet, Dr. Hannon explained. And carbs are not off-limits.

“They are growing boys, and they eat a lot. We want them to get at least half of their calories from carbohydrates – that’s a normal amount,” she said.

Playing sports is also part of their lives, and Dr. Hannon encourages that.

“We want them to be able to play sports, just be sure they know what their blood sugar is. It’s a little bit of a science project,” she said.

Type 1 diabetes is a fairly common chronic disease in childhood, affecting one in 350 school-age children, Dr. Hannon said.

“When I was first diagnosed, I didn’t want to think it was real,” Mason said, “but it’s really nothing. It’s just part of daily life.”

With the wisdom of a 7-year-old, Beckett pipes up, “It is what it is.”

While the new automated technology is not as sophisticated as the actual pancreas, which makes insulin, the pump both boys wear gives them insulin doses as needed, adjusted for what they eat and their blood sugar.

“It’s not perfectly automatic, so it’s not quite what your pancreas would do, but it is smart in that you have lines of communication that are inputting how much insulin to give a person over time,” Dr. Hannon said.

The evolution in care has helped their whole family, Katie said, adding that her 5-year-old now knows more about type 1 diabetes than most adults, even though she doesn’t have the disease.

Now that they have been on this journey for five years, the family wants to do their part to raise awareness of the disease and its symptoms, which may include increased thirst, frequent urination, extreme hunger, weight loss, fatigue, blurred vision and irritability or unusual behavior.

Type 1 diabetes can lead to heart and blood vessel disease, as well as damage to nerves, kidneys, eyes, feet and skin.

“This is important and something we have to manage, but I want us to manage diabetes. I don’t want diabetes to manage us,” Katie said. “That’s what this technology allows us to do. It allows for the boys to be well-adjusted and live full lives and to feel like they’re in control and not at the mercy of this disease.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

To mark 100 years of caring for children, Riley carpenters made this super sized wagon themselves. The Riley team spent around 35 hours creating every inch of this special wagon.

The big reveal happened in the Riley Maternity Tower atrium in front of dozens of Riley employees.

Check out this video for a behind-the-scenes look at how the project came together.

“Most of the time, obstetricians do a screening ultrasound around 18 to 20 weeks to look at the brain, lungs, heart, abdomen, and long bones and to estimate weight,” said Dr. Timothy Cordes, a pediatric cardiologist at Riley Children’s Health. “If they notice something doesn’t look quite right in their screening ultrasound, the doctor will refer the parents for a cardiac fetal echocardiogram.”

Fetal echocardiogram vs. ultrasound

An ultrasound and a fetal echocardiogram use the same technology to evaluate a baby’s heart in different ways. A fetal echocardiogram is more focused on the heart, allowing a pediatric cardiologist to view the structure and function of the heart, including its chambers, valves, arteries, and blood vessels.

“Fetal echocardiograms are also performed by either a pediatric cardiologist or, more often, a pediatric echocardiogram technologist who has special training in evaluating the heart, its arteries, and vessels,” Dr. Cordes said.

What are the reasons to have a fetal echocardiogram?

Sometimes, a fetal echocardiogram is routine, even if there’s no known issue with the baby’s heart. A mom will undergo an echocardiogram if there’s an immediate family history of congenital heart defects or other heart issues, diabetes or a maternal health concern that may affect a baby’s heart, like certain medications or chronic diseases.

If the baby’s heart appears to have an abnormality in the routine ultrasound, an echocardiogram will help the doctors better understand what’s happening. This heart-specific scan can detect issues like:

• Major structure abnormalities causing one or more heart chambers to not develop properly, or less serious abnormalities such as a hole between chambers.
• Transposition of the great arteries, where the two main arteries to the heart are switched.
• An abnormal blood vessel.
• An underdeveloped side of the heart.

While an abnormal finding in a fetal echocardiogram can be worrisome, it’s possible that the issue may simply require observation as the baby continues to develop.

“A baby’s heart continues to evolve throughout the pregnancy. You might have a hint of an issue at 18 to 20 weeks, but at 24 to 28 weeks, we can see much more detail and we can be more certain about what we’re seeing,” Dr. Cordes said. “The echo may give us some reason to be concerned about baby’s heart growth, but we might ask you to come back in four weeks and see how it’s evolved.”

Fetal echocardiogram: What to expect

For mom, the fetal echocardiogram will feel very similar to the ultrasound. An echo tech will place gel on the pregnant belly to capture sound waves using a wand (called a transducer) moving back and forth to gather pictures of the heart. Mothers do not need to fast or have a full bladder before the test.

If the cardiologist is administering the fetal echo, they will discuss the results with you. Otherwise, a cardiac echo tech will complete the test, and then the cardiologist will come in to discuss the results.

“An echocardiogram gives us the information right away, whether we think it looks good or if we have a concern to follow up,” Dr. Cordes said.

Most of the time, babies can tolerate whatever heart abnormalities are discovered before they’re born without needing an intervention, says Dr. Cordes. But if the heart issue changes how the delivery is managed, the doctor will discuss that with the parents ahead of time.

“We hold care conferences to discuss these issues with our maternal-fetal medicine doctors and neonatologists so we can fully answer the family’s questions and make sure everyone understands the plan at the time of delivery,” he said.

If the mom had a congenital heart problem in her childhood, Riley Children’s offers an Adult Congenital Heart Disease obstetrics clinic to talk about her pregnancy and discuss risks and how to manage them.

Co-directed by Gregory Montgomery, MD, pediatric pulmonologist at Riley Children’s, and Michael Johansen, DO, pediatric cardiologist at Riley Children’s, the program cures pulmonary arterial hypertension (PAH), a serious medical condition that affects the arteries in the right side of the heart. Though the disease is serious and likely fatal, proper diagnosis and treatment can improve a patient’s quality of life.

“Our program is a fully integrated partnership between the divisions of pediatric pulmonology and pediatric cardiology, guaranteeing a complete evaluation of each patient's unique cardiopulmonary physiology,” Drs. Montgomery and Johansen said. “It is truly a situation where two physicians collaboratively sit face-to-face and discuss each patient in detail, challenging each other's assertions and creating the most effective diagnostic or treatment plan.”

Accredited centers are chosen based on a certain level of expertise in PH care, and the program at Riley Children’s in particular has aimed for the commission since its inaugural year. “From the beginning, almost 10 years ago, we used the detailed guidelines for the PHA’s Pediatric Comprehensive Care Centers as a framework and guide to carefully construct this program over time,” Dr. Montgomery and Dr. Johansen added.

Additionally, the Pulmonary Hypertension Program at Riley Children’s is Indiana’s first and only initiative of its kind to provide care for children with pulmonary hypertension as a primary diagnosis, where Drs. Montgomery and Johansen take a personalized treatment approach to combat the condition.

“There are a limited number of medications that are formally approved by the FDA for use in children with pulmonary hypertension,” they said. “To address this, we continue to actively enroll children in several investigative clinical research trials that are looking at the effectiveness in children of PH medications already approved for adults.”

While the PHA-accredited program is successfully underway, Drs. Montgomery and Johansen will develop another project to study pulmonary hypertension in children with a certain type of severe congenital heart disease that requires a Fontan procedure. Still, the two are finding greater solutions to a pulmonary, cardiac approach, and their established program is no exception. “For us, receiving accreditation from the PHA is validation that we have built a program of national distinction that provides exceptional care for children with what is often a very concerning, even life-threatening diagnosis,” they said.

The cardiology program at Riley Children’s is acclaimed for treating pediatric patients with congenital heart diseases, known as a national leader with mortality rates below the benchmark. Likewise, the pulmonology program is home to one of the largest cystic fibrosis programs in the nation, providing expert care for patients in Indiana and elsewhere. Learn more in our annual report.

In part, Dr. Daley is the first to introduce The Perry Initiative to the Indianapolis community, an outreach program building a pipeline for women in the engineering and medicinal fields. Founded in 2009 by Dr. Jenni Buckley, a mechanical engineer, and Dr. Lisa Lattanza, an orthopedic surgeon, The Perry Initiative inspires young females to pursue careers related to science, engineering or medicine. Targeting females in high school, college and medical school, the idea exposes students to real-world orthopedics in hopes that one day, a new generation of ladies will steward the industry.

“I think all of us feel a debt of gratitude, that we need to pay it forward to the next generation because it was so impactful to us when we were younger,” Dr. Daley said. “Seeing the underrepresentation of females in my own resident program inspired me, and I would not have become an orthopedic surgeon without the support from The Perry Initiative. I want to bring the same opportunities to other girls in the Indiana area.”

Christine Caltoum, MD, division chief of orthopedics at Riley Children’s, is another woman who exemplifies female leadership in the industry. Earning her medical degree from Wayne State University School of Medicine, she specializes in pediatric sports injuries, limb deformity and leg-length discrepancy and complex hip disorders, among others. Further, she recently published two works via PubMed to study idiopathic clubfeet and talipes equinovarus in Indiana.

Dr. Daley and Dr. Caltoum are also alongside four female APPs working in pediatric orthopedics at Riley Children’s. Together, they are supportive of females in the orthopedic industry overall and are particularly intrigued by the formative work of The Perry Initiative Outreach Program in Indiana.

Moving forward, Dr. Daley has plans to host the outreach day in Indianapolis annually, and the entire female orthopedic team will continue pushing for female representation in the industry.

“There is clearly a lack of women in orthopedics, but I hope this team effort will change the face of that disparity,” Dr. Daley said.

Dr. Daley, Dr. Caltoum and the orthopedic team are acclaimed for providing exceptional pediatric care to patients. Learn more about the orthopedic program from our annual report.

The APS shapes the future of academics and advances child health and well-being through active engagement of its distinguished pediatric healthcare leaders. Founded in 1888, the APS is North America’s first and most excelled pediatric academic program, aiming to support the complete scope of child healthcare. This year, the APS admitted 95 new members nationwide, Dr. DiMeglio being one of them.

“I am honored to be recognized as a leading scholar in academic pediatric health,” Dr. DiMeglio said. She was the only new member from Indiana to be elected in 2023.

Dr. DiMeglio earned her medical degree from the University of Pennsylvania and completed her residency at Children’s Memorial Hospital. Following that, she completed her pediatric endocrine fellowship at Riley Children’s and earned her MPH from Indiana University-Purdue University, Indianapolis. Her research and clinical practice focus on chronic endocrine conditions, Type 1 diabetes prevention and metabolic bone disease research. Recently, she published multiple peer-reviewed articles, including editorials on women in diabetes, food insecurity and COVID-19 amid type 1 diabetes. Further, Dr. DiMeglio has developed a series of guidelines for care for the International Society of Pediatric and Adolescent Diabetes. As an endocrinologist, she particularly feels called to these research efforts to find ways to ameliorate the burden of Type 1 diabetes for children and their families.

“As a young child, my aunt had Type 1 diabetes, and I was curious about her condition and her care,” Dr. DiMeglio said. “My interest in diabetes grew further during my time as a pediatric resident. I was responsible for the care of many kids with onset diabetes – managing their diagnosis and talking with their families. Now our research team works to prevent the disease, preserve insulin production in people newly diagnosed with diabetes, and develop therapies and strategies to improve quality of life for patients living with the condition.”

APS members are nominated by current members and are chosen based off the nominee’s track record of pioneering efforts in academic pediatrics. Dr. DiMeglio was inducted during the APS Presidential Plenary on April 29, 2023, at the Pediatric Academic Societies 2023 Meeting.

“We are so delighted to welcome this outstanding group of pediatric scholars and healthcare leaders to our community,” APS president, Lisa Robinson, MD said. “Through active engagement with our programs and initiatives, the APS looks forward to drawing on the boundless creativity and talent of our members to address the most pressing issues facing academic pediatrics and child health.”

The pediatric diabetes and endocrinology program at Riley Children’s is accredited by the Association of Diabetes Care and Education Specialists, delivering expert care for children with diabetes and other endocrine disorders. To learn more about the leading efforts behind Dr. DiMeglio’s work and colleagues, see the annual report.

Alex Cruse was living the life of a teenager – going to school, working at Taco Bell and hanging out with friends.

Over the summer, all of that changed. Alex came so close to dying that his mother almost can’t bear to talk about it. Now, he sits beside her at Riley Hospital for Children, meeting a therapy dog named Gus and relearning how to speak through a trach and swallow without choking.

But he is alive and recovering, thanks to the gift of a transplant and the medical team at Riley who never gave up on him.

Michelle Cruse was having lunch with her son July 26 when she noticed the whites of his eyes were yellow. A licensed practical nurse for more than two decades, she knew something was up and got him in to see the doctor right away.

The next several weeks were a whirlwind, and those winds are just now beginning to calm as Michelle and John Cruse contemplate bringing their son home later this month.

Turns out Alex was suffering from an undetected autoimmune disease that was slowing killing his liver. By the time he made it to Riley from his home in Farmland, Indiana, July 27, his liver was dying and so was he. He went into septic shock, his mom said, and there was no guarantee that he would live long enough to get a liver transplant.

“We were in shock,” Michelle Cruse said. “I had my breakdown at the beginning. I sat on the bathroom floor, sobbing and begging God to save him. I knew the chances weren’t good.”

Within a day of being listed on the Organ Procurement & Transplantation Network waiting list, a donor matched with Alex.

“I was the happiest I’ve ever been in my life,” Michelle said. “But it kills me knowing somebody had to die for my child to live.”

On Aug. 2, doctors told Alex’ parents that the liver should be arriving later that day, but they had to take Alex to the operating room immediately to remove his liver because it was, in effect, poisoning him. Once they removed his liver, he could survive for 18 to 24 hours, so the donor liver needed to arrive soon.

Michelle and John Cruse knew they were taking a leap of faith. But they really had no alternative, they reasoned.

It was a Hail Mary.

Twelve hours after removing Alex’ diseased liver, transplant surgeon Dr. Richard Mangus was back in the OR, completing the transplant with the donor liver. He cautioned the family that the next 24 to 48 hours would be critical.

That turned out to be optimistic in Alex’ case. He remained in critical condition for much of the next two to three weeks, while his care team, including pediatric intensive care physicians Dr. Matt Friedman and Dr. Alvari Tori, as well as multiple nurse practitioners, nurses and other specialty teams struggled to stabilize him and deal with his medical complexities.

“The doctors call him a miracle. They said he was the sickest transplant patient they’ve had who has survived,” Michelle said. “I can’t say enough about the PICU; they were just wonderful.”

Alex has dealt with anxiety and depression during his recovery, his mom said, and his spirits have been up and down as expected, but she is pleased that his Riley team is addressing all of his concerns.

“Riley has been amazing, everything they’ve done,” she said.

And that includes the daily therapy he receives in the inpatient rehab unit, where he has worked for the past five weeks to regain the skills he lost during the worst of his illness.

Physical therapist Makenzie Maurer said his remarkable progress is a testament to his inner strength.

“He can get up without assistance, his balance is getting better, his endurance is better. He is a very hard worker,” Maurer said, “and he is facing a lot of new challenges in his body all at one time.”

The two mesh well because both have playful personalities, she said, cracking jokes and teasing each other.

“We like to keep things fun through all the craziness.”

And there’s one more thing about Alex, Maurer said.

In a unit where every patient and parent is dealing with challenges, Alex “tries to bring light and joy to everyone.”

Doctors originally suggested Alex would be ready for discharge Nov. 21, but the high school senior asked them to move that up. His 18^th birthday is Nov. 18, and he wants nothing more than to be home with his family and his dogs.

It’s a goal Michelle fully expects her son to reach.

“I told the doctors, ‘Tell him you want him to do something by Friday, and he’ll have it done by Wednesday.’ He’s always been determined,” she said.

Michelle is a vocal advocate for organ donation now, but she says Alex actually was ahead of the curve, choosing to become an organ donor when he went to get his driver’s license at 16. “What am I going to do with them if I die,” he said to his mom.

She believes that selfless act put him in a position to receive a lifesaving organ when he needed it.

“You put good out there, and it comes back to you.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

“Paula held my hand through the hardest nights of my life. It truly felt like the sun would never come up.”

Emily Totheroh still gets emotional when she talks about those hard days and nights this past summer, watching her newborn struggle to survive in the CVICU at Riley Hospital for Children.

Her son Brady was born June 28 with a heart defect that had gone undetected before birth. He was transferred emergently to Riley, and at one week old, he had his first open-heart surgery for transposition of the great arteries.

That’s when she met Paula Miller, a nurse on the ECMO team who saw her through the most difficult part of Brady’s journey.

Brady had to go on ECMO (extracorporeal membrane oxygenation) when his little heart and lungs were too weak to do their job after surgery.

“When my little man was on ECMO and unable to be taken off it, I really got into a dark place,” Totheroh said. “ECMO is so invasive and scary … the medications and equipment and staff needed to keep my baby alive … it was gut-wrenching.”

Instead of being home cuddling her newborn and loving on her 3-year-old, she was sitting in the hospital, praying for her baby boy to make it. Nights were the hardest.

“When the sun goes down and you’re postpartum, the emotions really come out,” she said.

“Paula was our night shift ECMO nurse for our sweet Brady multiple nights in a row. She took such great care of our boy. I truly can’t visualize those nights without her. She was so tender and so loving with my little man. She was also thorough and organized and attentive to every detail. She made sure our questions always got answered. She was calm, kind and matter of fact, yet comforting. Paula took the best care of my boy, more than any mom could hope for in that situation.”

Today, Brady is a happy, chunky, 4-month-old.

“He giggles and smiles constantly and is completely in awe of his big brother, Bo,” Totheroh said. “Looking at him now, you’d never imagine the rough start he got.”

The Knightstown mom and her husband, Andrew, won’t ever forget the seven weeks their son spent at Riley. They wondered if they would ever get to take him home.

But the comfort they received from the Riley team helped them through the experience.

“I’m a nurse, and I know what being a good nurse looks like,” Totheroh said. “What Paula did was beyond her job as a nurse. It was one mom looking out for another mom.

“I’m so grateful for the people who rallied behind us,” she added. “The people who loved on our boy and healed him when we couldn’t. The nurses, doctors and other heart mamas on the CVICU. It’s a community unlike anything I’ve ever witnessed.”

Totheroh was so moved by the nursing team who cared for her and for Brady that she nominated several of them for DAISY awards, recognizing outstanding clinical and compassionate care.

Miller was celebrated by her team and nursing leadership in October and said the award is meaningful to her “because I made a difference for that patient and family, and that is what matters most to me.”

Commitment to patients and families comes first, and it shows in the excellent care they receive by every member of the ECMO team, Miller said.

“We are a family as much as we are a team. We are always there for each other anytime we are needed day or night, taking calls or just being there to talk each other through challenging situations. I believe that is what makes us and many other Riley teams special. It is not just a job; it is a mission.”

Totheroh wants to give a shout out to everyone on their team at Riley, including heart surgeon Dr. Mark Turrentine and cardiologist Dr. Michael Johansen, “who was with Brady when we arrived at Riley, took the time to sit with us and help us grasp what was happening, and is now our cardiologist.”

There are too many nurses to mention, but all of them had an impact, she said.

“These people deserve so much recognition. There’s no way I could ever thank them enough for getting my baby home.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org, and Kellie Holan

Staff and patient families lined up along the balconies of the atrium to watch the performance.

The different Riley medical teams dressed up in specific costume themes to add to the magic of the day. From therapists dressed as beanie babies to the executive team as Mario and all of his friend, there was a big mix of characters dancing to "i feel better when I'm dancing" by Meghan Trainor.

Check out the flash mob here:

The players in attendance dressed up as superheroes, Fred Flinstone and more. Their festive attire brought smiles to many of the families they interacted with during their time at the hospital.

"It means everything to me to be able to bring love, bring joy and be a part of something so great," said Zavier Scott, one of the players.

The players were accompanied by Blue and Colts cheerleaders. They gave Colts gift bags to all the kids they met.

The little boy didn’t know what all the fuss was about, other than he was getting some important medicine.

But there he was last week, making history at Riley Children’s Health.

Paul, a kindergartner from northern Indiana, is the first patient in the state to receive a new drug therapy that could stop the debilitating and deadly effects of Duchenne muscular dystrophy.

DMD, which typically presents in boys in preschool to school-age years, is a serious genetic muscle disease that often results in patients losing the ability to walk by the age of 10 to 12, according to Dr. Laurence Walsh, Riley pediatric neurologist.

It is caused by a lack of dystrophin, a protein needed to hold muscles together. Without that protein, muscles begin to deteriorate, leading to paralysis, heart/lung failure and early death.

Riley is the first hospital in Indiana to administer the newly approved gene infusion therapy to attack DMD, which gives Paul’s parents, Paul Sr. and Lindsey, hope for his future. (The family asked that their last name be withheld.)

“We believe the timing of everything, from diagnosis to approval for the therapy to the date of the infusion, was divine intervention,” Lindsey said, adding that she and Paul Sr. hope their son has the chance at a more normal life, maybe even playing a little soccer someday.

“We want him to be able to run like other kids,” Paul Sr. said, as his son watched nurse Anna Busald prepare the first of four syringes that would pump hope and healing through an IV into the little boy.

“I’m gonna take my medicine now,” young Paul announced. “I can’t wait!”

The next 90 minutes passed without a hitch, Busald switching out the syringe infusions every 20 minutes and monitoring Paul’s blood pressure, while he focused on a sticker book and a doctor kit and ate a lunch of chicken strips and smiley-face fries.

When the beep sounded to signify the treatment’s end, a crowd gathered around Paul’s room to clap and cheer.

He grinned and said, “That was so fun!”

Even though Paul likes to wrestle with his dad, dance and take walks, his mom began noticing he was regressing in skills he had learned as a toddler. He couldn’t run, couldn’t jump with both feet and walked on his tiptoes, signs often linked to DMD. That’s when she sought out different therapies and was eventually connected with Riley for the shattering diagnosis of Duchenne muscular dystrophy.

“If I hadn’t followed up earlier when he was missing milestones, I still might not have known,” she said.

Since that diagnosis this past spring, things have moved really fast, Lindsey said, thanks to an intense effort by Katelyn Webb, nurse navigator, who has devoted the past few months to coordinating the treatment and getting prior authorization through insurance for the $3 million therapy.

Timing was critical because the drug is only approved for use in children 4 to 5 years old. Paul turned 6 just five days after his treatment, so it was the best birthday present possible for his mom and dad.

It’s been a labor of love for Webb, a former bedside nurse, who also spent a great deal of time calming the fears of Paul’s parents.

“This is lifechanging. I feel like we’re making history here, so I’m proud to be a part of it,” Webb said. “It’s been a lot to navigate, but Paul was at the top of my mind all the time.”

After more than 30 years in pediatric neurology, Dr. Walsh is thrilled to be able to offer a promising gene therapy treatment for patients with DMD, calling it a “ray of hope” for children and their families.

“It’s a very exciting time,” he said. “This is a disease I’ve been helping families through for three decades, and it’s pretty neat at this point to have something like this to offer them.”

While its use is currently restricted to kids ages 4 and 5, he expects it to be expanded to other children if it continues to live up to its promise.

“Until recently, we’ve never really had a treatment that promises to change the trajectory of the disease to a significant degree,” Dr. Walsh said. “We don’t yet know the long-term benefit, but we know that it has done better than anything else that has come before it.”

The hope now is that it gives kids more time while even better therapies are tested.

“It’s incredibly exciting after all this time to be on the cusp of these gene therapies that I think will make huge differences in children’s lives,” he said.

Riley Chief Medical Officer Dr. Mara Nitu agrees, saying it is an honor to be the first children’s hospital in Indiana to provide gene infusion therapy for the disease. “Our mission has always been to provide the best possible care to the patients and families we serve. Being able to offer this therapy underscores our commitment to giving our patients a chance at a brighter future.”

Paul will return to Riley weekly for the next few months so his care team can monitor his overall health, including his liver function.

From the clinical trials, Dr. Walsh said children who have received the therapy begin to separate themselves from their untreated peers over the next two years in terms of preserved level of function or improvement in function.

“I would hope to see those same benefits in Paul over the same time period.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Riley Children’s Health is home to Indiana’s first Certified Duchenne Care Center, recognized by Parent Project Muscular Dystrophy. The program provides advanced treatments and compassionate care from a multi-disciplinary team of experts. The addition of the gene infusion therapy for DMD adds to the growing list of treatments and specialized procedures available to families in Indiana and around the Midwest.

On October 7th, she finally received that call.

Samantha says the months living apart from her young daughter and husband were very difficult. But, she's incredibly grateful to her donor and their family for giving her more time to be a mom.

During her recovery, Samantha worked hard to regain her strength. She pushed herself to meet physical therapy goals. Her efforts paid off when she was able to leave Riley less than two weeks after her transplant.

The moment she walked out of Riley Children's Health with a new heart was the high point in a journey that began when she was a baby at this same hospital. She has spent 30 years struggling with heart problems. Now, she's able to have a fresh start.

It was Donut Day in the Riley Children’s Health outpatient physical therapy gym last Thursday, and Tyler Riddle was dressed for the occasion.

He told his mom he wanted to be a chocolate donut for Halloween, and there he was, dressed like a donut while doing donuts on the floor outside the therapy space, spinning around and around.

What he didn’t know was that physical therapist Creola Woolery and occupational therapist Jenna Trost knew their young patient was coming in dressed as a sprinkled donut, so they pulled on adult-size donut rings themselves in a surprise move.

It made for an oh so sweet afternoon, as Tyler, 4, squealed with delight when he saw the therapists and rushed into their arms to make something like a donut sandwich.

Tyler is a rambunctious boy who has progressed by leaps and bounds since he was born 16 weeks prematurely in January 2019.

Literally, he leaps and bounds through his days, his mom, Ashley said.

“He frolics. That’s the best word to describe it. He’s a happy, skippy, jumpy guy, and now he runs too.”

Walking, much less running and jumping, seemed unlikely when Ashley and Shane Riddle looked at their 1-pound, 12-ounce preemie, who was transferred to Riley Hospital for Children within days of his birth at 24 weeks and two days’ gestation.

“He’s doing all the things they thought he wouldn’t do,” Ashley said. “He is smart as a whip, and he remembers everything.”

Tyler, who is in developmental preschool, has benefited from multiple therapies through Riley and First Steps, including the combined occupational and physical therapy he receives from Trost and Woolery each week.

A weak core, toe-walking and a sensory processing disorder are a few of the things being addressed in therapy, but to watch Tyler in the gym, you wouldn’t know he had faced so many challenges in his young life.

He knows the drill during his therapy session – climbing through a large tire, jumping with both feet over small obstacles, dropping paper “donut” rings onto plastic targets, sitting at a desk to color letters, jumping on a trampoline and riding a large trike through the halls to find more paper donuts on the walls, to which he attaches orange paper sprinkles.

Only orange will do because that’s his favorite color, his mom says. Even his eyeglasses are orange.

“I love how we’re dressed like donuts and nobody bats an eye,” Trost laughed as she followed Woolery and Tyler down the hall. “Can you tell we work in a children’s hospital?”

They make it fun, but therapy is about real work too, said Woolery, who has been working with Tyler for about a year.

“A lot of the things we do for physical therapy like coordination Jenna also does with him for sensory regulation,” she said. “Our obstacle course gets at both of those at the same time.”

Tyler has always been active, always wanting to get up and go, she added, but sometimes the things that require a little more control are more difficult.

Take running, for instance. Tyler was more comfortable skipping and galloping until recently.

“One of the big things we noticed was when we were going outside one day, he was actually running versus galloping,” Woolery said.

That might seem like a small thing, but it was a big deal for Tyler’s parents, according to Riley Outpatient PT supervisor Sarah Johnson.

“His dad actually saw him first run on the playground and was very emotional,” Johnson said. “As you can imagine, when parents aren’t sure if their little ones will reach certain milestones, it’s always a big deal when they do.”

Woolery also is working with Tyler on walking heel to toe rather than on tiptoes, something most of us do without thinking.

In Tyler’s case, it takes a lot of focus, but eventually it will become more natural to him, she said.

Riding a bike was another challenge – the reciprocal movement with his legs was difficult for him – but he shows off his skills when he goes on the great donut hunt outside the gym.

“When Tyler first started therapy, our main goal was regulation and getting him to participate and engage with us,” Trost said. “It’s huge that he’s sitting here doing tabletop activities, then an obstacle course, while Creola is giving him directions and he’s following those. He’s come a long way.”

Both therapists say that speaks to his parents’ work with him at home.

“Having a parent who is committed to a home exercise program and does everything we ask them to do is just the best.”

Ashley Riddle, who has two younger children at home, is a fierce advocate for her son, so seeing how hard the Riley team works to help him move through obstacles means the world to her.

“Every week, he asks, ‘When can I go see Miss Jenna and Miss Creola?’ Whether he looks forward to playing with them or terrorizing them, I don’t know,” she said with a laugh. “I would like a little bit of his energy.”

When the hourlong session is up, you might think the therapists would take a quick break before their next patient, but they have a routine.

Tyler and his mom head to the glass elevators in the Maternity Tower with Woolery and Trost. They say goodbye when the elevator doors open, then Woolery and Trost rush over to the other side of the atrium so they can wave to Tyler as the elevator takes him and his mom down to the lobby.

He grins and waves with the enthusiasm of a little boy who can’t wait to see them again.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

Couple’s miracle baby is home after 101 days in Riley NICU - She didn’t think she could get pregnant, but she did. When she went into labor almost four months early, she thought she was losing him, but she didn’t.

Katie has worked at Riley for 13 years! Watch the video to see her reaction to the surprise.

Here is the full compliment submission:

"I would Like to nominate Katie Collier RN. She is a shift coordinator in Riley’s OR. She has gone above and beyond. She is helping to manage the Ortho Service line as we are recruiting for this role. She also changed her schedule to accommodate our patient acuity and the ability to safely care for our patients. She is always available and willing to help. She came in the other weekend to help assist with a emergency to only go home shortly after when additional team members were made available. She did this all with a smile. She displays the One team spirit and a culture of putting our patients first. She needs to have a shout out for all her years of dedication to the families and patients of Riley and supporting the Periop Space."

Angie Eugenio can’t help but wonder what she could have done differently.

Because really, she did all she could do, all she knew how to do, to save her son.

And still, it wasn’t enough.

Angie and Randy Eugenio’s 19-year-old son, Tate, died by suicide Nov. 27, 2021, at his family’s home in Zionsville, Indiana.

He was a sophomore at Purdue University, a graduate of Zionsville Community High School, a member of Christ Lutheran Church, a musician, a beloved son and grandson, a brother to Claire and a friend to many.

“He was a kid with direction and focus and a caring, compassionate heart,” his mom said. “He had a heart for service, he loved music, he had a huge number of friends, he was talented, he was intelligent, he was a deep thinker. And he brought a light to everybody he met.”

But too often, he struggled to find that light himself.

Both Angie and Randy are physical therapists for IU Health. In their grief, they wanted to do something purposeful to not only honor their son but to help other families navigating mental health issues. They are advocating for better care and communication to spare others the pain they experienced.

The couple became involved with the Riley Children’s Health documentary, “Racing to Respond,” when it was just an idea last year. The film is airing in select cities over the next several weeks. All screenings are free, but attendees must register for their preferred screening location ahead of time.

The purpose of the documentary, featuring Riley leaders, clinicians and other interested partners in the city and state, is to raise awareness of the pediatric mental health crisis in Indiana and issue a call to action.

“We have to realize that we’re at a point where we need to do something different,” Riley Children’s Health President Gil Peri says in the film. “I’ve very optimistic that together as a community we can make a big impact on pediatric mental and behavioral health.”

In 2020, the Indiana Youth Institute reported that the percentage of Hoosier middle and high school students who considered suicide was 11.8% for sixth-graders and 19.3% among 10^th-graders.

An entire generation of Hoosier youth is in crisis, yet more than half of kids with a mental health or substance use disorder are not receiving treatment. A serious shortage of providers both nationally and in Indiana means families are waiting months to get appointments.

According to the Indiana Center for Prevention of Youth Abuse and Suicide, Indiana’s suicide rate has been higher than the national average since 1999, and it is the second-leading cause of death for Hoosier teens.

Every one of those numbers reflects a person, a family, a community shattered by grief and unanswered questions.

For the Eugenios, who attended the first screening of the film last week in Evansville, it’s not easy seeing their personal story playing out on a big screen in front of strangers, but they chose to participate in the film to encourage others to talk openly and honestly about suicide and how it can be prevented.

In Tate’s case, it wasn’t enough that he was smart, funny, kind and talented, or that he had a supportive family and friends who loved him.

He suffered from increasing bouts of depression. He was hospitalized twice but did not get the level of support he so desperately needed, his mom said.

“Tate was not shying away from seeking help,” Angie said. “He was not afraid to ask for guidance. He was not afraid to be admitted to the hospital for treatment. He was not afraid to take medication. He was doing everything in his power to help himself.”

And his family was doing everything in their power to help him.

“We knew Tate was struggling, and we sought help, and yet we still couldn’t find the right formula for him.”

She doesn’t want anyone else to have to ask “why” as they grieve the loss of a child to suicide.

“It’s hard as a parent not to blame yourself, but it’s not helpful to do that,” she acknowledges.

Still, she said, people want to know what they can do to keep it from happening to their child.

“They may not come out and say that, but I know that’s what they want to know.”

Tate was not a marginalized kid, she said. He was not an unsupported child, nor did he come from a traumatic household. That reality can be unsettling for people, who often want to assume the same tragedy can’t befall their family.

Answers are elusive, but Angie knows that saving kids from suicide begins with improved education about mental health as a disease and better access to treatment for patients and families.

“I want healthcare to improve, and I want people’s understanding of mental illness to improve, and I want this epidemic of suicide to stop,” Angie said. “I don’t know that I can do any of that myself, but I can shine a light on mental health, and I can make people understand it’s OK to seek mental health services.”

As her family approaches the two-year mark of the loss of Tate, she is grateful for the chance to share her son’s story with others in the hope that even in death, his light will continue to shine.

“I have joy along with my grief, and I’m trying to carry both of them. I feel better when I’m doing something positive rather than just sitting in my own sorrow,” she said.

“I want to live in a way that would make Tate proud and let him know I’m not giving up and I don’t fault him, because I know he tried as hard as he could. I feel we as a community failed him.”

If you or someone you know needs help, call the National Suicide Prevention Lifeline at 988.

Join us for a documentary screening of "Racing to Respond" followed by an evening of conversation designed to create greater awareness of the pediatric mental health crisis we face in Indiana, as well as a call to action to address this challenge. Find out more and register here.

At age 16, Anne was diagnosed by the Riley Children's Health team. Her jaw discomfort was impacting her ability to speak, eat and play sports. She was eventually connected with Dr. Shaun Matthews, who launched a specialized multi-disciplinary clinic aimed at helping patients just like Anne.

Dr. Matthews performed a procedure that essentially washed out Anne's jaw and removed debris. Then, he flooded the joint with a steroid which acts as an anti-inflammatory medication.

"I came out of the surgery and felt like a new person almost immediately," Anne said. "My life has only gotten better with Dr. Matthews in it."

Dr. Matthews will be honored at the Arthritis Foundation Bone Bash this weekend as the medical honoree.

Patients, their parents and siblings made their way to the annual BOOville Haunted House inside the museum.

From a spooky laboratory to a frightful frozen scene, the kids were able to get into the Halloween spirit a little early.

For the Riley kids like Payton, who can’t leave the hospital, a robot gave them the chance to experience the haunted house. Payton was able to drive the robot herself from her hospital room and interact with the Children’s Museum Guild witches.

Plus, a full tour of the haunted house will be available to patients on the hospital televisions.

The Riley Children’s Health heart team recently completed its 36^th medical mission trip to Amman, Jordan.

CVICU nurse Heather Dornbusch chronicled the trip, led by Riley cardiothoracic surgeon Dr. Mark Turrentine, who spends his vacation time each year performing lifesaving surgeries on children who don’t have good access to care.

“As always, we had the most amazing experience at Al Khalidi Hospital,” Dornbusch said. “It’s incredible to see what these families have sacrificed to get their children to Jordan … to get the lifesaving care they so desperately need.”

The weeklong trip included 13 little hearts mended, 10 open-heart surgeries, multiple heart caths, lots of echocardiograms and many lives forever changed, she said. There were also reunions with previous patients, always a treat for the team.

Along with Dr. Turrentine and Dornbusch, Dr. Mouhammad Yabrodi, a critical care physician at Riley, and Dr. Michael Johansen, a cardiologist, were among those making the trip again this year. Also participating on this trip were physician assistant/intensivist Kelly O’Neal, nurses Peyton Wilson and Becca Baute and perfusionist Roaya Braqa.

For Wilson, her first trip to Jordan was “truly lifechanging,” she said.

“You really feel like you’re doing very meaningful work. My first shift back at Riley, I was just profoundly grateful because we have so much that is right here at our fingertips that allows us to give such high-quality care to our kids,” Wilson said.

Unfortunately, many hospitals in the Middle East don’t have access to the same types of technology and treatment, so kids don’t always get a second chance at life, she said.

Dornbusch is among those humbled by the experience, which is made possible by Gift of Life Amman, the Josh Lindblom Foundation, Rotary Club of Greenfield and Chain of Hope UK, among others.

“If you need a change of perspective, this is a sure way to get it,” she said. “We have been blessed with the skill to help these children with cardiac defects, but we would not be able to do what we do without the donors that make this trip possible. From Indiana to the UK to Jordan, we have donors near and far who make it possible for our team to give these children a second shot at life.”

This might have been Wilson’s first trip to Amman with the Riley team, but it likely won’t be her last.

“I absolutely loved it, and I would 100 percent go again,” she said. “It was truly probably the best week of my life.”

Previous stories:

Heart surgeon’s vacations are spent saving lives overseas - Dr. Mark Turrentine and his Riley team just returned from a week in Amman, Jordan, where they corrected heart defects in a dozen children.

Ashley says NICU nurse Jennifer VanHooser made her wish of holding her babies at the same time come true. From then on, they formed a powerful bond that provided Ashley the support she needed to navigate her family’s time on the unit.

Due to her husband’s job, Ashley had to bring her three older children to the NICU each day to visit the twins.

“Jennifer was always including my older children in care time for the twins, she would all of the thousands of questions, offer solutions to their emotional outbursts and would chart in the room to give me an extra set of hands so I could also be attending to the twins.”

We surprised Jennifer with this compliment and captured her reaction on camera. Watch the sweet moment here:

You could say it was a match made in heaven. But in this case, the match was made on Earth, and it saved the life of a little boy from Indiana.

It was a swab of the cheek that brought together two strangers – a young woman from the East Coast named Rachel Buck and a young leukemia patient named Jacob Parry in 2019.

The two didn’t meet then (that would come two years later at a baseball game), but because of Buck’s decision as a college student to register at BeTheMatch.org, her bone marrow was tapped to save Jacob.

And that’s how it came to be that Jacob and his family were front and center for Buck’s wedding to Brandon Miller last month in Massachusetts.

There was 5-year-old Jacob, accompanied by his twin brother Jared, walking down the aisle, carrying the all-important rings for the ceremony. The two were dressed in matching white shirts, suspenders and bow ties.

Buck and Miller invited the boys and their older brother, Jackson, to be part of the big day after meeting the Parry family in 2021 and keeping in touch ever since.

“I just love them so much,” said Buck, 25. “The sheer fact that I’m rewarded with them being in my life is so amazing.”

Amazing is also the word Jacob’s parents, Jeff and Kaylie Parry, use to describe the gift that Buck has been for their family.

“What an amazing impact she has had on our family,” Kaylie said. “We are so thankful Be The Match brought us together, and we really do thank God daily for all of the amazing people he has put in our lives, including Rachel and Brandon.”

The gratitude goes both ways.

“I’m the lucky one, honestly,” Buck said. “It’s so crazy and beautiful to me that Jacob’s whole family is my family.”

Jacob was diagnosed with leukemia when he was just a baby. He went through chemotherapy at Riley Hospital for Children in preparation for a stem cell transplant in the summer of 2019. But he needed a donor.

His parents were 50% matches, as was his older brother. His twin (not identical) was a 0 out of 10 match.

Enter Rachel, who had registered with Be The Match as a student on the campus of the University of New Haven in Connecticut. It took just a minute to have her cheek swabbed and her information entered in the database.

“Cancer has struck my family, as it has so many others,” she said, “so I thought, why not register?”

She didn’t know it then, but she was a perfect match for a baby named Jacob who was fighting for his life in Indiana.

That decision four years ago would have a ripple effect. Not only did it save Jacob’s life, but it deeply affected the lives of everyone in his family and hers. And she never misses an opportunity to encourage others to register on BeTheMatch.org.

“I tell everybody to sign up for the registry. I can’t even describe the feeling you get.”

She carried that passion through to her wedding by replacing table favors for guests with cards indicating a donation for Be The Match had been made in the guest’s name.

Dr. Jodi Skiles, director of pediatric stem cell transplant and cellular therapy for Riley, said donors like Buck who are willing to put their lives on hold for a stranger don’t come around very often.

“From the word go, she was all in, whatever we needed, whenever we needed it,” Dr. Skiles said. “She is amazing, truly lovely in every way.”

For Buck, the experience has been a privilege, and she has treasured the connection she has with the Parry family.

“Last year, we went to their place and did an early Christmas,” she said. “We toured Notre Dame, watched Christmas movies, made cookies and went to a Christmas concert at their daycare.”

Jacob’s mom sends her texts occasionally – messages she calls “thank you Rachel moments.” It could be a picture of Jacob at the pool or playing with his siblings – moments they might not have had if Buck hadn’t come into their lives.

“Even when the chaos of life with three little boys is in full swing, we are so blessed to have every minute of it,” Kaylie Parry said.

Four years out from his stem cell transplant, Jacob is cancer-free and had his first appointment at the Riley Survivorship Clinic last month. His parents’ gratitude extends beyond Buck to the entire Riley team who fought to save him.

They have become “family,” his mom said in an earlier interview. “It’s such an awesome feeling that you’re not just a number. They treat you the same as they would treat their kids.”

Jacob is back to enjoying lake days with his cousins, doing chores on the farm with his grandpa and watching “Tom and Jerry” cartoons.

The kindergartner might not understand the totality of the gift he was given, but he knows he has a cool “Aunt Rachel,” and that’s enough for now.

Two families and a whole lot of love.

There couldn’t be a more perfect match.

Photos provided by the family and Emily Hwang Photography

Previous Stories:

Three-year-old cancer patient meets the woman who saved his life - Jacob Parry nearly died of leukemia, but the selfless gift of a stranger restored his health. Over the weekend, he met his superhero at a baseball game.

Selena VillaGomez-Diaz is nonverbal, but that doesn’t mean she can’t communicate.

The 5-year-old, born with a chromosomal abnormality and severe scoliosis (abnormal curvature of the spine), smiles, laughs, cries and points to get her message across. And her parents, Angel and Jessica, read her well.

“She’s a little diva,” her dad said with a laugh.

In fact, she appears to have them wrapped around her little finger as they check out a glowing lamp, a puzzle and an aquarium in the radiology department at the Riley Outpatient Center.

The family (big brother Alexander is in school) is back at Riley for a follow-up appointment with Selena’s spine surgeon, Dr. Tyler Christman.

They want to know how her spine is healing and straightening and what to expect next in her treatment.

In July, Dr. Christman implanted growing rods in Selena’s spine to address her worsening kyphoscoliosis, an aggressive form of the disorder that can compromise organ function if not addressed.

While recovering at home, she was required to wear a supportive brace to prevent her from bending or twisting to a degree that would interfere with healing.

The good news, Dr. Christman said as he reviewed her new X-rays last week, is that she can stop wearing the brace, now that she is more than 10 weeks out of surgery.

Even better, her X-rays show much improvement, he told the family after he examined Selena’s back. Prior to the growing rod surgery, the kyphosis curve was 95 degrees, and now it is 44 degrees.

“She is sitting up a lot straighter. That’s going to let her be a lot more interactive and alert, and also help with standing because she’s not leaning forward anymore,” Dr. Christman said.

A normal spine curvature is 20 to 50 degrees. A curve greater than 50 degrees indicates kyphosis and causes individuals to appear hunched over.

That hunch is what Angel Diaz first noticed when his daughter was about 2 months old, he said.

“She was leaning to one side all the time, even when she lay down or when we picked her up,” he said. “She was always slouched over to one side.”

As a result of that and developmental delays, the kindergartner is not walking yet, but her parents have high hopes for her.

“She is really energetic since the surgery,” her mom said.

“At first, she didn’t want to move too much, but she is getting used to the rod in her back,” her dad agreed. “Hopefully, she’ll be more confident in walking and standing by herself. Before, she felt off-balance,” he said. “Now, she stands up for a bit and tries to walk from one end of the couch to the other.”

While casting can be a particularly effective treatment for infantile scoliosis, eventually patients age out of that option, Dr. Christman explained. The spine becomes more rigid and less amenable to casting as children get older. Those children graduate to a brace, and some, like Selena, need to have growing rods.

Next up in her treatment in about a month is the first attempt to lengthen the MAGEC (Magnetic Expansion Control) rod in her spine, which will take place in the ortho clinic at Riley. It’s an outpatient procedure, where a magnetic device will be placed on her back to slowly expand the rod – in this case by a fraction of an inch.

“We will start very small – 3 millimeters, getting X-rays before and after,” Dr. Christman said. “The rod itself will only lengthen to the point it’s safe to do so. We will attempt 3 millimeters, but we may get 2.”

The growing rod expansion is a bridging technique to allow the spine to be controlled and supported while the patient continues to grow, he explained. Eventually, a more permanent fusion surgery is done.

Selena, who weighed just under 28 pounds when she had the rod implanted, is up to 32 pounds now. She relies on a feeding tube to get more calories, but she is able to take some food by mouth.

“She’s a tough little cookie,” Angel Diaz said, as he got down on the floor with her to play. “She scoots around and annoys her brother and plays with the dog. She bounced back pretty quickly.”

And as long as she is happy, he is happy.

“I just want to know she is doing well and that this is working.”

As they got up to leave the clinic last week, Dr. Christman had one last thing to say: “Thanks for trusting me to be her doctor.”

Previous stories:

“Growing rods” can help straighten tiny patient’s spine - Five-year-old Selena has severe scoliosis, but the Riley ortho team is working to correct the “extreme curve” that threatens her health.

The contracted formula brand will transition from Gerber brand products to Enfamil brand products.

You can find details about the formula transition here: https://www.medialab.com/dv/dl...

Hudson Megnin doesn’t care that it’s Newborn Screening Awareness Month.

He doesn’t understand that he was diagnosed with cystic fibrosis as part of the state’s newborn screening program shortly after birth. Or that his parents are both carriers of the CF gene, even though they didn’t know it when he was born.

The 1-year-old son of Logan and Demi Megnin of Bloomington is focused on living the life of a toddler – eating, walking, learning new words and playing peek-a-boo.

“His CF diagnosis definitely came as a surprise,” said Demi Megnin, who had a scheduled C-section at 39 weeks in Bloomington.

When he hadn’t pooped in 48 hours and tests showed a blockage in his intestines, Hudson was moved into the NICU at IU Health Bloomington Hospital, then transferred to Riley Hospital for Children in Indianapolis.

One of the earliest symptoms of cystic fibrosis, a disorder that impacts the lungs, digestive tract and other organs, often is meconium ileus, which happens when a baby’s first stool is blocking the last part of the baby’s small intestine.

Hudson’s mom hoped that’s all it was, but within a few days, the test came back positive for CF.

It was a lot for the Megnins to digest. Their older daughter is a carrier, they learned after her birth, so they knew that one of them must be a carrier, but they did not get tested before Hudson was born. They assumed he might be a carrier but did not expect him to have the disease.

“It becomes your new reality,” Logan Megnin said when asked how they adjusted to the news. “You do what you have to do to keep them healthy,” his wife agreed.

That means regular checkups in the CF clinic at Riley, where they monitor his growth, nutrition, breathing and digestion. He takes pancreatic enzymes to help him absorb and digest food, gets physiotherapy on his chest and back twice a day to keep his lungs clear and takes breathing treatments as needed.

Early treatment for genetic disorders is crucial to long-term health, which is why Dr. Kristen Suhrie, a Riley neonatologist with a special interest in NICU patients affected by genetic disease, champions newborn screenings to get ahead of a diagnosis.

“We’ve developed a dedicated program for newborns with genetic diagnoses to get them connected with appropriate therapy quickly,” she said.

“We partner with the state lab so that all those tests that come back positive are referred to Riley for care. The newborn screening lab provides the testing, and we provide the clinical evaluation and treatment for those children,” Dr. Suhrie added.

Approximately one in 300 live births recorded comes back positive for one of more than 50 disorders covered in the screening, which is a simple blood test for babies typically done about 24 hours after birth. The results generally come back within a week but can be expedited if clinicians already suspect a disorder is present.

Riley offers treatment for all of the disorders tested for in the screening, Dr. Suhrie said, “so it’s very beneficial if we can have that diagnosis early, even before they have any symptoms.”

“Therapies help improve outcomes for those kids, so we try to get that diagnosis within days of birth.”

Because cystic fibrosis primarily affects the GI system and the lungs, it’s critical to begin treatment early, the physician said.

Children with CF produce a thick, sticky mucus that clogs the airways in the lungs and can lead to serious infections. The mucus also affects the esophagus, stomach and intestines and can cause poor nutrition and growth.

“When we make a diagnosis like Hudson’s, we address the GI system. Sometimes those babies are born with intestinal blockages because of the thick secretions that are in their intestines. Sometimes they need a surgery to correct that or supplements to help them absorb and digest their food. We start that right away.”

Addressing any respiratory problems caused by mucus buildup is the other component of therapy, which includes chest physiotherapy and breathing treatments if required.

This year, the FDA approved the use of the drug Trikafta for children with CF who are 2 to 5 years old and have at least one copy of the F508del mutation. Those ages 1 to 2 with at least two F508del mutations can be treated with the drug Orkambi to help slow the disease’s progression.

By all accounts, Hudson is doing great today – hitting his developmental milestones and gaining weight like a champ. That’s a testament to his parents’ care and his Riley team’s expertise. That team includes pulmonologist Dr. Don Sanders, dietitian Karen Maguiness, gastroenterology, nursing, respiratory therapy and social work, among others.

“Having that team has really helped, Demi said. “We were not fully prepared for the CF diagnosis, but we took it in stride, and we’re doing awesome.”

The Cystic Fibrosis Center at Riley is the only pediatric center accredited by the Cystic Fibrosis Foundation in Indiana.

Learn more about the state’s newborn screening program.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Ja’Marrion Young loves the camera.

“Cheese,” he says over and over, sporting a huge grin before asking to see the images a photographer has captured.

The only time the 3-year-old is not ready for his close-up is when he’s in pain. And unfortunately for Ja’Marrion, pain is part of his life.

The Fort Wayne boy, son of Janyia Grundy and Untarrius Young, was diagnosed with sickle cell disease as part of the state’s newborn screening program that tests for more than 50 conditions, including metabolic disorders, cystic fibrosis, congenital hearing loss and congenital heart defects.

The goal is to quickly identify birth conditions so that treatment can begin promptly, leading to better long-term results.

Sickle cell disease is an inherited blood disorder that causes red blood cells to become sickle- or crescent-shaped. That often leads to frequent infections, swelling in the hands and legs, pain, severe fatigue and delayed growth. It is most common in Black and Hispanic populations.

Ja’Marrion was just a few months old when he first came to the Riley Children’s Health sickle cell clinic, recalled Dr. Seethal Jacob, director of the hospital’s Comprehensive Pediatric Sickle Cell Program.

“I remember meeting him and mom when they came for a cardiology evaluation and building the relationship from there. We’ve appreciated her entrusting us with Ja’Marrion’s care.”

But Ja’Marrion had a few other things going on when he was born. He had surgery by Dr. Mark Turrentine for a heart defect at about 6 months of age, then surgery by Dr. Frederick Rescorla for a congenital diaphragmatic hernia.

He continues to see pulmonologists Dr. Gregory Montgomery and Dr. Evans Machogu at Riley, along with Dr. Jacob.

Without his other diagnoses, he might not be as prone to pain episodes, considering he takes hydroxyurea to control his sickle cell. Hydroxyurea, which was approved by the FDA for use in pediatric sickle cell patients in 2017, helps prevent formation of sickle-shaped red blood cells.

“Any other 3-year-old on hydroxyurea, they may have a pain event here or there, but we don’t typically see the frequency we’ve been seeing with Ja’Marrion,” Dr. Jacob said.

Instead, the little guy has been hospitalized multiple times this year, both in Fort Wayne and at Riley, as doctors work to manage his pain.

So, Drs. Jacob, Montgomery and Rescorla have been working together to determine if Ja’marrion’s compromised lung function, especially as it relates to the diaphragmatic hernia, could be affecting his sickle cell disease, Dr. Jacob explained.

“The way he is or isn’t oxygenating his red blood cells, is that causing him to have more pain episodes than we would expect at his age on his medications? It’s been really helpful to think through the complexities of Ja’Marrion’s care with them,” she said.

None of this collaboration would be possible without the active participation of the toddler’s parents, particularly his mom, who makes the two-hour drive to Riley frequently to ensure her son gets the best care possible.

She knew nothing about sickle cell when she was informed of the diagnosis when he was just a few days old, but she learned that both she and Ja’Marrion’s dad are carriers of the sickle cell trait, though they have no symptoms of the disease.

Since then, she has educated herself and others in her family about the disease and advocates for her son within the healthcare system.

That’s why she drives the distance to Riley, which provides comprehensive, lifelong sickle cell care, including access to FDA-approved therapies, clinical trials and research studies.

“The care here is amazing,” Grundy said. “Without them I don’t know what we would do because I’d be losing my mind. I love it here.”

With the exception of a blood draw during a visit last week, Ja’Marrion is cooperative and engaging with everyone on his care team. He gives high fives and takes deep breaths as instructed – he even says cheese – so that Dr. Machogu can listen to his lungs; he lets a hematology fellow push on his belly; and he lies still while Dr. Jacob looks in his mouth and ears.

He laughs heartily at everything and nothing, and he squeals with delight as he bounces a ball across the exam room, over and over again.

“He’s a happy boy,” his mom says, “when he’s not having a sickle cell flare-up. He’s very smart, funny and loving.”

Grundy would gladly absorb the pain her baby feels if she could. Instead, when it hits, he screams and cries, she said.

“I hate seeing him when he goes into a crisis. You can’t touch him, he won’t eat. Sometimes he wakes up screaming. The medicine is not strong enough, so we have to take him to the emergency room, and then it’s full blown.”

She said she’d rather have him in the hospital at Riley, despite the distance, because the team knows how best to help him.

“Ja’Marrion’s mom is a perfect example of the commitment our patients and families make when having a child with a chronic disease,” Dr. Jacob said. “Mom makes the trip from Fort Wayne every couple months and spends hours with us to make sure her child gets the expert care he needs.”

She’d rather the family not have to travel so far, and telemedicine does make it easier for some, but Ja’Marrion benefits from being seen in person by his Riley team because of his other medical issues.

“We really need to bring attention and awareness to sickle cell disease because it shouldn’t be difficult for our families to find expert sickle cell care,” Dr. Jacob added. “We’re lucky here in Indiana to have telemedicine, to have our program at Riley, but thinking more broadly, nationally, we have to figure out a way to bring expertise closer to home.”

While there have been advancements in treatment for sickle cell, including stem cell transplant, there remains a long way to go, so Dr. Jacob is part of a team of researchers looking to improve care. Riley is a site for several studies, including one on sickle cell trait markers and another on a potential new drug in the pipeline.

The goal in the first study is to better understand what it means to be a carrier of sickle cell and provide updated education and counseling for patients, she said.

“We say the same things today that we said 30 years ago about trait, which is just not acceptable. Our community is telling us we need to dig deeper.”

At the same time, she finds hope in her patients and those who advocate for them.

“Watching this new investment in therapeutics and research for sickle cell disease has brought me a lot of hope because I am able to provide my patients with that hope. I’m constantly in awe of our patients and families,” she added.

“Historically, people have talked about the sickle cell population as a population that doesn’t want to participate in research or enroll in clinical studies, and yet our patient population happily enrolls in our studies,” Dr. Jacob said.

“We are the top enrolling site for several of the studies that we’re in because they want that. They’re looking for a way to improve their child’s experience, their experience and/or the experience of those who come after them. That’s amazing, and that’s an incredible sacrifice. But when you make research acceptable and accessible for patients, they want to be a part of it. Finding that balance is really important.”

Grundy is all in when it comes to getting her son the best treatment. And she’s found that at Riley.

“I thank Riley for all the support they give and everything they do to care for my little boy,” she said. “Even though we’re two hours away from home, they still make it feel like we’re at home.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Ashtyn faced cancer twice in her childhood. Her second battle nearly killed her.

She says she owes her life to the Riley medical team that managed to find a treatment to save her after she developed a fungal. The infection impacted all her major organs and kept her being able to get chemotherapy. Ashtyn says her doctor did not rest until he was able to come up with a plan that would allow Ashtyn to fight the cancer.

Ashtyn now sees all types of patients coming through the radiology department. She says she strives to give her best every day because she knows what it’s like to be that young child sitting in a hospital room facing a difficult journey.

A freak accident brought together specialists from Riley Children’s Health and IU Health Methodist Hospital to save the life of a little girl last month.

One wrong move, one bad decision, and 7-year-old Olivia might not have been doing cartwheels in the lower level of the Riley Outpatient Center this week.

Olivia, her two older brothers and parents Phillip and Jessica (who asked that their last name not be used) returned to Riley on Tuesday evening to meet with the doctors who saved her life after she was injured by a blow dart at a friend’s house in northwestern Indiana.

The nearly 3-inch-long dart pushed through her nostril and embedded in a bone at the base of her skull. A tiny portion of the dart could be seen protruding from the girl’s nose, but Olivia’s mom, a nurse, knew better than to attempt to pull it out.

That could have been disastrous, risking damage to nerves and arteries and potentially uncontrolled bleeding, doctors said.

With any kind of penetrating object, Riley pediatric neurosurgeon Dr. Laurie Ackerman said, never try to pull it out yourself. It must be done in a controlled environment.

Instead, after Jessica arrived on the scene, she took her daughter straight to the emergency department at a nearby hospital in northwestern Indiana.

ANSWERING THE CALL

Dr. Ackerman, interim division chair for pediatric neurosurgery at Riley, was on call that Saturday night in early August when doctors at the other hospital requested a consult on Olivia’s care, providing X-rays of the dart lodged in Olivia’s skull.

Viewing the scans while she talked with the emergency team there, Dr. Ackerman could see the dart was piercing a bone in front of the spinal cord at the bottom of the skull, something you don’t see very often, she said.

“The hospital did a wonderful job of stabilizing her, getting pictures that we needed and giving us the opportunity to prepare on this end.”

That preparation included a huddle with multiple providers here, as they looked at the images and discussed the best approach to treatment.

“We have a very deep bench here,” Dr. Ackerman said of the Riley and IU Health teams. “We have people with specialty expertise to handle about anything that rolls in the door.”

Olivia was transferred to Riley via LifeLine ambulance, arriving shortly after 11 p.m., her mom recalls.

Dr. Ackerman and Dr. Matthew Partain, a pediatric otolaryngologist (ear, nose and throat), were there when she arrived, as were members of the operating room team and radiologists.

Olivia was “incredibly calm,” Dr. Ackerman recalls. “She was one of the coolest customers I’ve met in the emergency department.”

That’s not the Olivia her parents know and love. Jessica and Phillip said their daughter typically is unnerved by hospitals and medical care in general.

“We knew something was up because she doesn’t act that way,” her dad said, admitting that he was a mess himself. “She’s not calm for medical stuff.”

Yet, she was aware of what had happened and open with the medical team about what she was feeling, Dr. Partain said.

“When they arrived at Riley, we had everyone ready to triage and make sure she was stable enough to go through a couple more tests and get things ready for the operating room,” he said.

DINNER MUST WAIT

IU Health neurosurgeon Dr. Mitesh Shah, interim chair for the Department of Neurosurgery, was not on call that Saturday night and had plans to go out to dinner.

When Dr. Ackerman contacted him and explained Olivia’s case, he quickly realized his evening was about to change.

In 30 years as a neurosurgeon, this was something he’d never seen. In fact, he didn’t even know what a blow dart looked like. (Blowguns are legal in Indiana.)

“When I got the call, I knew that based on the location of the dart, this was not something that a community hospital could handle,” Dr. Shah said, noting the tip of the dart was so close to the vertebral artery, she could die if it pierced the blood vessel.

“Once we got over the shock and awe of what we saw on the images, we decided about the strategy. It not only was embedded in the bone … it had traversed the covering of the brain and was sitting in spinal fluid. Fortunately, the brain stem wasn’t affected and the nerve it was adjacent to (which moves the tongue) wasn’t affected.”

The plan was to engage ENT specialists to work through the nose to remove portions of bone, thereby loosening the dart.

“We had to organize a team in the middle of the night that had expertise in managing the specialized equipment we needed,” Dr. Shah said.

Dr. Partain explained that the team had a space of 2 centimeters (about ¾ of an inch) across to work with. “If there’s anything hiding around corners, we have angled instruments to see where we’re operating. It’s important for us to visualize everything completely and know we’re able to get our instruments safely back where we needed to operate.”

“RARE, CRITICAL SCENARIO”

Dr. Satyan Sreenath, an ENT rhinologist and skull-based surgeon at Methodist and Riley, was part of that team called in to operate on Olivia.

He recalls going into a Zen-like state on his drive to Riley in the early hours of Sunday morning.

“There is no standard operating procedure for something like this,” Dr. Sreenath said. “It was completely unique … a rare, critical scenario.”

The team of surgeons put their heads together to figure out, “how do we utilize our known techniques to be able to handle this unknown territory.”

The team prepared to do brain surgery through the nose, inserting a tiny camera, drill and other instruments that would enable them to remove a small portion of bone to loosen the dart, while at the same time keeping it from shifting and lacerating the vertebral artery.

“In the old days, we used to take off half the skull and retract the brain to be able to get to that area in the center of the head,” Dr. Sreenath said. “Endoscopic skull-based surgery laid the foundation for a lot of our modern collaborative neurosurgical and ENT surgical approaches.”

“GREAT RELIEF”

As surgery got underway, he said, “Dr. Partain and I are very cognizant of – how do we minimize damage to other structures in the sinus cavity to be able to loosen this projectile? We’re trying to save this little girl’s life, but in the back of your head these are things that are also important.”

Olivia’s parents were anxiously awaiting word during the operation, and part of that time Jessica remembers talking to her daughter, even though she was in another room.

“Right before Dr. Ackerman came out to tell us that they got the dart, I started talking to (Olivia) and reminded her that she was strong and she had a lot of life left and she needed to come back and see her brothers and do this and that,” Jessica said.

Her daughter would later tell her that she saw her great grandmother, who died a few months ago, while she was sedated.

“She was holding my hand, but you guys couldn’t see her because I was asleep,” Olivia told her parents.

Surgery lasted several hours through the night, but Olivia did well and was moved to the pediatric intensive care unit to recover at about 6 in the morning.

BACK TO GYMNASTICS AND SCHOOL

For a situation that could have gone “six different ways,” Dr. Sreenath said, seeing how well Olivia is doing today is “the greatest relief.”

Olivia, who spent much of Tuesday’s reunion at Riley chasing her brothers around the room and doing cartwheels on command, seems none the worse for her experience. She is back in school, participating in gymnastics and playing with her friends.

Her parents, though, are still recovering from the trauma.

“God forbid anybody has to go through something like that,” Jessica said. “These doctors are absolutely phenomenal. They listened, they communicated, they knew their job. Honestly, I’m kind of in love with all of them because they’re great,” she added.

“We couldn’t do anything but place all of our trust that they were going to save her, and they did.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Maylee Tishner was diagnosed back in May. She’s on her fifth round of treatment. Despite the difficulties that come with chemotherapy, Maylee has managed to show her parents that she’s able to hold on to her strength throughout it all.

You can often spot Maylee driving her bright pink tricycle around the hospital. She frequents the Riley Child Life Zone where she loves to do crafts or hang out in the outdoor play area.

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Join us for an exclusive screening and panel discussion at six locations across Indiana.

All screenings are free but you must register in advance. RSVP for your preferred viewing location here.

Dates and locations

• Tuesday, Oct. 10: Evansville, Bally’s Riverfront Center
• Monday, Oct. 23: Bloomington, Indiana University Cinema
• Wednesday, Oct. 25: West Lafayette, The Loeb Playhouse
• Monday, Oct. 30: Fort Wayne, The Grand Wayne
• Wednesday, Nov. 1: South Bend, The Century Center
• Monday, Nov. 20: Indianapolis, Gainbridge Fieldhouse

After a pandemic that put enormous strain on healthcare workers, you might wonder what keeps Riley Children’s Health team members coming back day after day.

Sure, the paycheck is important, but it’s no surprise that for most, it’s all about the kids.

In a bid to help Riley team members reconnect with their purpose, a “Why Wall” sprouted near the entrance to the Maternity Tower Downtown and also at Riley at IU Health North Hospital.

The initiative, organized by Riley’s team member engagement group, invites people to grab a piece of paper and write down their “why” before posting it on the wall.

The results are sweet, honest and meaningful for those who take the time to read the responses.

“To help give kids with cancer the future they deserve.”

“I love tiny humans!”

“To give back to a hospital that gave to my family.”

“I love the difference I am able to make for the families I help.”

Jasmine Bundrant, a medical assistant, returned to Riley after working in the adult healthcare world for a few years. As she contemplated her “why,” she said she enjoys the hands-on experience she gets at Riley and that the nurses she works with are very open to teaching her.

But mostly, she said, “I love working with the kids and our amazing families.”

Austin Wooten, operations manager for pharmacy, has been full time at Riley just over a month, but he’s been with IU Health for five years. He started as a pharmacy tech during school and recently completed a two-year residency.

His “why” is hard to fit into a couple sentences on a small piece of paper, he said, but he remembers as a resident when he helped with Afghan patients who were brought to Riley from Camp Atterbury after the mass exodus from Afghanistan two years ago.

Even though he couldn’t speak their language, he could communicate with the kids by making balloons out of hospital gloves to help put them at ease.

“It’s the smiles you see on the kids, seeing them in the wagons … it brings a different level of meaning to your work,” Wooten said. “There’s a lot more positivity working with kids.”

Nurse manager Amy Birchfield said she’s lucky that she always knew she wanted to be a nurse.

“Even through these tough times, I still want to be a nurse. I still want to take care of patients. It looks different for me than it did 20-plus years ago, but I want patients to feel safe and cared for here,” she said.

“I’m really fortunate to lead a team of nurse experts who are smart, kind, innovative and funny. If that’s not motivating, I don’t know what is.”

Another nurse said it like this: “Walking into Riley feels like walking into home. You get to meet the most wonderful people here and help them through some of their toughest times.”

Earlier this week, nurse Traci Dayhoff, who helped organize the wall project with Tiffany Smith, noticed a parent reading some of the responses that had been posted on the wall.

“As I got closer, I noticed she was crying. I approached her and asked if everything was OK, and she said that she loved reading all of the reasons why people work at Riley and she just feels the love coming right out of the display.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

There are three types of scoliosis: congenital scoliosis (present at birth), neuromuscular scoliosis (caused by conditions like spina bifida and cerebral palsy) and the most common form, adolescent idiopathic scoliosis, whose cause is unknown.

How to check for scoliosis

Scoliosis screening is a routine part of physical exams during well-child visits to the pediatrician or family doctor. Scoliosis screening age varies by gender, but it typically occurs around the end of elementary school for girls and during middle school for boys. Your child’s doctor will begin with a simple “forward bend test” to check the spinal curve.

“In this test, the child bends forward as if they are going to dive into a swimming pool,” Dr. Puryear explained. “If one side of the body lifts higher than the other as they bend forward, it indicates they may have a rotational deformity.”

If a forward bend test shows a spinal curvature, your child’s doctor may order a “long film” x-ray to view your child’s entire spine. Riley Children’s Health offers EOS imaging, which captures these long images using a lower dose of radiation than traditional x-rays. These images help the doctor determine the size of the curvature. Curves 10 degrees or more are considered scoliosis.

Early intervention for scoliosis

The treatment for scoliosis depends on the degree of curvature in your child’s spine and how much more growing they have left. For instance, a girl with a 20-degree curve who’s two years past her first menstrual cycle is nearing the end of her growth. However, a boy with a 40-degree curve at 13 years old can continue to grow into his 20s and may benefit from an early intervention. For some children, it begins with simply monitoring their growth and curvature through observation.

“We use the child’s hand to monitor where they are in terms of growth, or we can mark a spot on their pelvis to follow how much they grow over time,” Dr. Puryear said. “We’ll measure them every six months to see if they’ve reached a plateau or are still growing.”

For smaller curves and less complex instances of scoliosis, your child’s doctor may suggest:

1. Observation to see if the curve worsens or stays the same.
2. Physical therapy to improve core strength and flexibility. Riley offers Schroth Method physical therapy, which is specifically designed to for scoliosis correction.
3. Back braces for curves between 20 to 40 degrees. When worn 18 to 20 hours a day, these custom-fit back braces increase the chance of avoiding surgery by nearly a third. (Casting is available for very young children with scoliosis.)

The goal of an early intervention like a back brace is to stop spinal curvatures from worsening, and they can sometimes improve the curvature.

“If you imagine a tomato plant growing sideways, we put stakes in the ground so plant can grow straight up along the stakes, as opposed to sideways,” Dr. Puryear said. “With growing children, if we see they start to bend like a tomato plant growing sidewise, we try to stabilize them to grow straight.”

Surgical interventions for scoliosis

Surgery is an option for children with a severe spinal curve measuring more than 45 degrees that continues to progress. The goal of spinal surgery is to prevent scoliosis from worsening irreversibly into adulthood.

Spinal fusion surgery is the most common type of surgery used to treat scoliosis because it is effective and permanent. This procedure fuses together vertebrae into proper alignment and holds them in place with rods and new bone growth. The fused area will no longer bend or grow, but the vertebrae above and below this area allows for continued motion and growth.

Children must wait to undergo spinal fusion until they’re mostly done growing, so there are other options to address spine curvatures until then:

• Growing rods are surgically placed along a child’s spine to guide healthy growth. Children begin a schedule of straightening the rods every few months as they grow. Newer styles of rods allow this to be done in clinic using an external magnet rather than repeat surgeries.
• Non-fusion surgery, or “tethering,” offers more movement than fusion surgery and is growing in popularity. This type of surgery places screws in the vertebrae that are attached to a flexible tether to pull the spine into alignment. Tethering treats specific, single-curve scoliosis and relies on the child’s future growth, so it may require additional treatments.

Whether your child’s scoliosis simply needs to be monitored or requires an intervention, speak with your doctor about your concerns. Physicians who treat scoliosis see patients of every age and with every degree of curvature; they’re prepared to answer your questions.

“Parents are often most concerned about not doing anything at all and then that decision harming their child later. We all want to do the best for our children, so even if it’s a five-degree curve, we want to give you the time to voice your concerns,” Dr. Puryear said. “Our job is to understand where you’re coming from, educate you on what we think will happen and monitor it with you to make sure it isn’t a problem later.”

Here's the note from baby Jolene’s mom:

Our daughter, Jolene, was born while I was only 27 weeks pregnant. (November 21, 2022). She had a lot of gastrointestinal issues and almost died. We made the decision to be moved to Riley, which is where we were for the next 6 months. Jolene’s main nurse was Lindsey Mehringer, in the NICU. She is the most amazing nurse we have ever had. She always cared for Jolene. From making sure she had clothes, and making crafts with her, and would even bring in gifts for her. Above all, she was always there for me and my husband. It’s tough for someone to be empathetic toward a situation they’ve never been in. But Lindsey was there for us every step of the way and she never made us feel alone. We always knew our girl was safe if she was in Lindsey’s hands. The day Jolene finally got home was a dream for us. And as a gift, Lindsey made us our own ABC story book all made with Jolene’s hand and footprints. And she also made Jolene her own diploma and NICU graduation cap.

A tiny, plastic creature comes flying out of the hospital room, rolling into the hall and skidding to a stop just as visitors arrive.

The green guy’s name is Gekko from PJ Mask fame.

Inside the room squeals a little boy attached to a machine that keeps blood flowing to his failing heart.

The boy’s name is Adriel Hernandez, famous in his own right on the Heart Center at Riley Hospital for Children.

Together, the two are having some kind of imaginary battle, but only Adriel knows the rules. The 2½-year-old sorts through more toys on the floor of his hospital room as the game continues.

Soon there will be even more noise and more toys. Adriel’s brother, Josue, 4, and mom, Glenda Hernandez, arrive after dropping off the boys’ big sister at school. The family, which includes dad Josue, is from Nappanee, Indiana, but they are moving to Indianapolis to be closer to Riley.

The brothers get lost in the world of play while nurses, therapists and aides peek in to say hi amid the chaos.

This is a pretty average day for Adriel, who has been inpatient at Riley since May. Diagnosed with hypoplastic left heart syndrome while still in his mother’s womb, he underwent open-heart surgery at Riley when he was just 1 week old.

Since then, he’s been in and out of the hospital as his heart function has continued to decline.

In June, Adriel was put on the Berlin Heart, a pump that helps maintain blood flow in cases of heart failure. By July, he was on the transplant list.

Now he waits. His parents wait. His care team waits.

“It was really hard at first,” Glenda Hernandez said about the thought of her little boy getting a heart transplant. “You don’t know how his body is going to react. That’s the scary part.”

Adriel is oblivious to most of this worry, of course. But he has his moments. He has certain triggers in the hospital, his mom says, like going near the elevator (which might take him to surgery) or seeing an unfamiliar team member.

For a while, he would blow kisses to the food service team when they dropped off his meals, but he wanted to keep nurses and therapists an arm’s length away. Now he engages with everyone.

He’s been known to have a few meltdowns, but today, he’s excited to see physical therapist Meredith Parks, as she pops in to invite him on a walk.

First, he has to grab his Woody hat (a “Toy Story” favorite), then she has to put on his gait belt, unscramble the wires attached to him and make sure his Berlin Heart, nicknamed JJ (for a character in Cocomelon and for cardiologist Dr. John Parent), comes along for the ride.

And then they have to step around all the toys Adriel and his brother have scattered on the floor.

Checking to be sure his mom is right behind him, Adriel, clutching Gekko, steps out into the hallway with Parks and an entourage of fans.

He’s popular on the unit, and his hat is an attention-getter, but Glenda remembers when just getting out of bed was a struggle for him.

Parks remembers too. Her job is to keep him conditioned so that he remains healthy for transplant.

“When he first got his Berlin, he was not this mobile,” she said. “He did not want to play or get out of bed, so we’ve come a long, long way. We want him in the best functional spot for transplant.”

As they make their way to the playroom on the third floor, he stops suddenly and begins to cry, prompting his mom to pick him up and reassure him.

It’s hard on her heart to see her baby going through this, but she hugs him, kisses him and tells him it’s going to be OK.

In the playroom, he busies himself making pretend waffles and waving to nurses passing by. Asked a question by Parks, he strikes his “thinking pose,” guaranteed to get him laughs.

“He’s always been dramatic,” Glenda said. “It’s always been his way or the highway.”

Ever since he was diagnosed when she was pregnant, she said she’s had a sense of peace that he’s going to be OK.

“I know God has a plan. I just hope he gets a good heart and has a good, long life.”

The cardiology and heart surgery program at Riley Children’s Health is ranked among the best in the nation by U.S. News & World Report.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous story:

She has a heart baby at home and the Riley team “in her back pocket” - As part of Riley’s cardiology home-monitoring program, 5-month-old Adriel Hernandez is able to be home with his family while a care team follows his progress virtually.

“Once your child is adequately treated, seizures are unlikely to substantially affect schooling, but it’s good to have an action plan prepared to share with your child’s school that covers medications, what to do in case of a seizure and any activities your child should avoid,” said Dr. Makram Obeid, a pediatric neurologist at Riley Children’s Health.

What’s a seizure plan?

The Epilepsy Foundation offers a customizable seizure plan for school. These types of plans offer your child’s school a way to familiarize themselves with your child’s needs, seizure precautions and how best to support them. Oftentimes, your child’s medical care team will help you create a seizure plan to share with your child’s school.

“Our families come see us every three to six months in clinic, and at that point we update their seizure plan for school with any recent change in medications,” said Anna Schultheis, nurse practitioner for the Epilepsy Program at Riley Children’s Health. “On the seizure rescue plan, we describe what your child’s seizures look like, since they can look differently from what you may see in the media. Sometimes your child may appear to be spacing out in class, but they’re actually having a seizure. We also explain how to intervene on a seizure with rescue medication. That’s all outlined on that rescue plan.”

Having an action plan helps families feel reassured that their child’s needs are being met, and it also guides educators in how to identify your child’s needs and respond to them appropriately. When your child’s teacher or nurse knows what to expect, they may be less likely to dial 911 during a brief seizure but understand that emergency care may be needed for seizures lasting for more than five minutes. Plus, it offers an opportunity to communicate about your child and avoid epilepsy discrimination, which can still carry a stigma.

“It’s the parent or caregiver’s decision on how much privacy they want to maintain about their child’s condition,” Dr. Obeid said. “Historically epilepsy has been misunderstood, and unfortunately, these children’s intelligence may be underestimated. But for some kids, seizures may happen frequently enough that sharing relatively detailed information is the best plan.”

Does my child need extra support in class?

Having open communications also allows your child to have the resources they need to succeed in school. Individuals with epilepsy may experience learning difficulties, behavioral issues or missed school days due to their care. Accommodations for these needs can be spelled out in an individual learning plan (IEP) or 504 education plan, which is protected by law.

“Even when a child has mild epilepsy, they can sometimes experience behavioral, attentional or mood challenges that need to be addressed,” Dr. Obeid said. “Children with epilepsy could have excellent academic performance, yet if there are questions about attention, behaviors or learning issues at school, you can ask your child’s doctor to perform neuropsychological testing to better understand their areas of weaknesses and strengths.”

The results of such tests may help in better tailoring the academic environment and demands to your child’s abilities, and sometimes may even call for an optimization in the medication regimens.

“Sometimes it helps to speak with your child’s primary teacher about educational support, whether it’s getting extra time to take tests or complete assignments. These children may also miss school when they’re ill or undergoing testing, so it’s beneficial to have a little extra grace on attendance,” Anna said. “Set aside a meeting between you and your child’s teacher to go over your child’s specific needs.”

Can students with epilepsy participate in sports?

The epilepsy team at Riley encourages people with epilepsy to participate in sports and other activities at school. However, it’s important to first have seizures under control for several months before participating in activities that may entail high speeds or high impact.

“Children with epilepsy can participate in almost all kinds of sports activities, as long as their seizures are adequately treated,” Dr. Obeid said. “For sports like swimming, rope climbing, weight-lifting or bicycle racing, we usually want at least six months to a year of complete seizure control prior to allowing a child to participate in such activities.”

Discuss any questions or concerns you may have about your child’s epilepsy care at school with your medical care team. Together, you can collaborate with your child’s school to ensure your student has a successful education.

Andrew Kinder never met Tyler Trent, but the two shared many similarities – a passion for sports, a love for Purdue University, a connection with Riley Children’s Health … and a cancer diagnosis.

Trent was 15 when he was diagnosed with osteosarcoma, yet he never let the disease define him. He attended college at Purdue, where he inspired his fellow Boilermakers and the nation with his positive attitude and fighting spirit. Along the way, he raised money for Riley and cancer research.

In his honor, Trent’s parents, Tony and Kelly, worked with Purdue to establish the Tyler Trent Courage and Resilience Award, a scholarship recognizing undergrad students who have faced adversity with the kind of strength Trent displayed before his death in 2019.

Kinder, who comes from a family of Purdue grads, including his parents (Patrick and Betsy) and two older sisters, knew about Trent, of course. You couldn’t be from a Purdue family and not know about the aspiring sportswriter and honorary captain of the school’s football team who had legions of fans rallying around him.

Kinder even witnessed Trent’s impact firsthand during an upset win by Purdue football over Ohio State University in 2018. Trent (pictured below) was on the sidelines; Kinder was in the stands.

“Everyone there knew something special was going on,” Kinder said.

Though the two never met, Kinder, then just 15, felt his presence during that game and would later draw on that energy in his own cancer fight.

It was 2½ years later, the spring of 2021, when Kinder was diagnosed with acute lymphoblastic leukemia (ALL). He was a junior at Cathedral High School at the time and wanted nothing more than to get back to the lacrosse field after months of grueling treatments.

His mom is grateful that the Riley team understood and respected that desire, while providing him the best care possible.

“They knew Andrew’s interest was getting back on the lacrosse field, and they geared his treatment around getting him back by his senior year,” she said.

It was the motivation he needed, so when he was able to play that last season, he played, even as he continued treatment.

“They loved Andrew for Andrew,” she said of the Riley care team. “We’re very thankful for the relationships he developed with the nurses and the doctors.”

Dr. Sandeep Batra, Kinder’s oncologist, and several nurses were on hand last month when Kinder, now a sophomore at Purdue, rang the bell at Riley, signifying the end of his two-plus years of treatment.

Also with him were family members and a few good friends who have seen him through the past 2½ years, cheering for him outside his hospital room when COVID-19 kept visitors away, FaceTiming whenever they could and shaving their heads in solidarity.

That support and the memory of how Trent handled his illness left a mark on Kinder, who struggled to talk about his cancer journey while driving back to Purdue with his mom after a doctor’s appointment last week.

That’s because Kinder prefers not to talk about cancer or doctors or hospital visits. He has moved on.

In fact, if he’d had the chance to meet Trent, he’s pretty sure they wouldn’t have talked about cancer.

“I don’t think I’d talk about being sick,” he said. “It’s my least favorite thing to talk about, and I figure it would be the same for him. We’d probably talk about sports.”

Kinder doesn’t play for any of Purdue’s elite teams, but he follows them, like Trent did, and he plays intramural sports, including basketball and soccer. He describes himself as an “outdoorsy” person who loves hanging out by the lake with family and friends.

In fact, that’s just what they did after he rang the bell. His parents hosted a big party at a lake house to celebrate his accomplishment.

“That party was two years in the making,” Betsy Kinder said.

And that wasn’t all they had to celebrate. Kinder recently was honored as the recipient of the 2023 Tyler Trent Courage and Resilience Award.

It’s recognition he neither sought nor expected, but he can’t help but be a little proud.

“You hear the word cancer, and you never really think it’s real, but it was,” he said in a video produced by Purdue. “As a Boilermaker, you always keep pushing. You can’t let anything stop you.”

Trent was the epitome of Boilermaker determination, Kinder said.

“His mindset is something I look at as motivation. You’ve always got to keep going.”

Photos submitted and courtesy of Purdue University/John Underwood

These training sessions allow those who care for maternity patients to be prepared for any surprise situation that may come their way.

Different groups went from one station to another to go through specific scenarios. Then, they debriefed with physicians and nurse educators to review best practices.

Superheroes of all shapes and sizes spilled out onto the grounds of Riley Hospital for Children this weekend to celebrate Riley’s first NICU Superhero Fun Walk.

Part-reunion and part-fundraiser organized by the NICU Nest team to benefit the Riley Children’s Foundation, the event brought caped crusaders – aka parents, grandparents, former patients, siblings and team members – together Saturday for games, music and a chance to reconnect with those who walked their NICU journey.

“We owe our lives to Riley,” Courtney Hamil said, as she and husband Zach corralled their three kids near the IU Health LifeLine ambulance across the street from the hospital.

Ari Hamil, 7 months, spent a week in the NICU after he was born, and both parents remember how the team not only took excellent care of Ari, but of their whole family. Part of that care included books created for siblings Calvin and Hadley to help them understand why their brother was in the hospital. Calvin was particularly interested in an incubator on display at the event, which he decided must be a greenhouse.

“We’re just incredibly grateful,” Zach said.

Liz Nedza knows the feeling well. After spending months in the neonatal intensive care unit with her son, Nicholas, who was born three months early, she was looking forward to Saturday’s event with her parents and her husband, Kory, but her emotions got the better of her.

“I got out of the car and just started bawling,” Nedza said. “I feel so blessed to be able to bring Nicholas back here, not just because he is no longer a patient but to be here to celebrate him and every person here. This place is so special to us.”

When Elly Schroeder learned about the superhero-themed event, she knew her family had to be here.

Daughter Margo was discharged from the Riley NICU earlier this year on National Superhero Day, a day when professional window washers dressed as superheroes entertained Riley patients while rappelling down the building.

On Saturday, young Margo was mostly oblivious to what was going on around her, but her big sister, Lillian, was rocking her Wonder Woman outfit as she took care of a baby doll at an education table staffed by child life specialists Amanda Banker and Gail Miller to teach kids about life in the NICU.

“Lilly has been a mommy and a nurse and a doctor at home,” said Elly Schroeder, whose husband, David, and son, Charlie, also were on hand.

And Charlie, who never got to come to the hospital to see his baby sister when she was in the NICU, was excited to see the place and the people who made baby Margo better.

“He always asks about it,” she said, “so to be part of this is cool.”

Elesia Hines, Riley NICU psychologist, said the event is an opportunity for families to come together to celebrate their children and find a measure of healing themselves.

“It’s amazing to see,” she said. “It’s wonderful for providers and families to see each other outside the hospital and celebrate all of the milestones.”

For those parents (or kids) who wanted to write a note to a special nurse, doctor or therapist, she had paper, pens and a Riley mailbox to make the job easier.

Dr. Deena Elsahy, a fellow in minimally invasive GYN surgery at Riley, knows that her 19-month-old twins, Yaseen and Ameen, are running and playing today because of the care they received in the Riley NICU in early 2022.

She and her husband, Dr. Nhany Elsahy, said their boys wouldn’t have survived “without all of the amazing people in the NICU.”

Perhaps the most senior provider attending Saturday’s festivities was Dr. Jim Lemons, who served as a neonatologist at Riley for more than four decades, including many years as director of the Division of Neonatal-Perinatal Medicine.

“Best day of the year,” he said as he surveyed the crowd with his wife, Pam, a longtime neonatal nurse practitioner.

Current division chief Dr. Laura Haneline couldn’t agree more.

“I’m so excited to see so many families here, and it reminds us why we do what we do every day,” she said.

Brian “Junior” Aylor collected friends and fans like other kids collect Hot Wheels or stuffed animals.

People who met him couldn’t help but be smitten by his grin, his giggles, his fake laugh and his love for books, farm animals and Cocomelon.

“Junior joy” is how his mom described it. And it was infectious.

A lot of the friends he made were at Riley Hospital for Children, where the little boy spent most of his short life.

Junior, who celebrated his 3rd birthday with a party at Riley in June, passed away two weeks ago, not long after undergoing his second heart transplant.

It was during a prenatal appointment when Brian and Mallory Aylor found out their baby had serious heart defects, including hypoplastic right heart syndrome, tricuspid atresia and transposition of the great arteries.

Junior underwent his first heart transplant just a few weeks before his first birthday. The family, which includes big sister Gabi, enjoyed a year at home before Junior’s new heart began to fail. It would be another year before a second heart became available for transplant, but he could not overcome the complications that followed.

His death shook the team at Riley, where he wiggled his way into the hearts of nurses, doctors, respiratory therapists, physical and occupational therapists, and maintenance personnel – all of whom could share a Junior story or two.

Whether it was the day he donned a white coat and scrub cap – twinning with his favorite surgeon, or the birthday party when he dressed as a farmer watching over his toy animals, or the countless times he walked the halls of Riley in his “old man” robe, he made his mark on the Heart Center.

Of course, Mallory and Brian Aylor always knew their little boy was special. But now, legions of folks know it too.

“Aren’t we the lucky ones,” one team member said about being in Junior’s orbit.

Because as much as Junior was a son, a little brother and a grandson, he was a boy of great joy – albeit with complicated medical needs – for those who surrounded him at Riley.

“There are so many things that he has taught me in his short life,” Mallory Aylor said as she summoned the strength to pay tribute to her son at his service last week.

“He was strong, he was brave, he lit up any room he was in. He taught me that happiness and joy are not circumstantial, but a way of living purposefully every single day.”

Most of all, she said, “I love the way he loved. It was so pure, and you could just feel his love when he looked at you. He was a bright light to many, and I pray I can continue to spread Junior joy.”

Junior loved books, especially books about trucks and farms. He would snort like a pig, or moo like a cow, his mom said, but he could also trumpet like an elephant, roar like a tiger and flutter his hands like a butterfly.

Emily Heflin, a nurse on the CVICU, said she had the privilege of taking care of Junior the day he was born and on his last day at Riley.

“He will forever be remembered for his Junior joy. Any bad day on the unit, and there are many, he would make it better with his smile and willingness to play,” Heflin said. “Junior and Mallory made me a better nurse and mother. His spirit will always be felt on the third floor.”

Sarah Crider, also a nurse on the CVICU, remembers how Junior loved to give fist bumps and blow kisses, how he loved movies and eating ice.

“Ice, ice baby,” he would say. It happened so often a nurse bought him a shirt with those very words.

“He was so special and so happy despite his situation,” Crider said. “It was an honor to care for such a sweet boy, and I’m so sad things didn’t go the right way. We all tried our best.”

About 25 Riley team members traveled to Bloomington for Junior’s funeral service last week, something they couldn’t have done without the support of others at Riley who stepped up to fill their shoes while they were away.

“PICU stepped up, travel nurses, pool nurses … that spoke volumes about this place and how we all come together," said CVICU nurse Melissa Keesling. “People knew we were hurting. There was just something about Junior.”

For those team members who couldn’t get away, she worked with Riley chaplain Maggie La Rocque and others to provide a time and space for them to grieve at the hospital.

There were photos, flowers and a bowl of tiny rocks shaped like hearts for people to take to remember Junior and why they choose to do the work they do. There was even a “rage book,” for colleagues to express their anger or sadness, not just about Junior’s death, but other patients they’ve lost.

“There is power in expressing your feelings, whatever they are,” La Rocque said.

For Keesling, Junior will forever be associated with joy in her mind.

“There was joy because of him, the pure joy he brought us and the joy he got out of life. I will do things the rest of my career and think, ‘Junior taught me that.’ I used to stop in his room to say hi or read a book, and he would blow kisses,” Keesling recalled.

She blew him one last kiss as the funeral service ended.

Submitted photos and file photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

Junior gets his second hero heart - Three-year-old boy has been waiting at Riley for a transplant since July 2022.

Junior gets a new heart weeks before his first birthday - Brian and Mallory Aylor’s son was born with multiple heart defects. He has been hospitalized at Riley for 7 months.

Junior waits for a second hero heart - The 2-year-old transplant patient is back at Riley as his parents pray for another lifesaving gift.

“We both took her in and took our turns crying in our masks,” Laura said. “We were trying to keep her from getting overwhelmed or stressed out.”

Harper quickly started chemotherapy. She had to visit Riley weekly for treatment. Her cancer journey meant missing out on school and the activities she loves.

It’s been a long road.

Now, she’s moved on to the next phase of her cancer journey. She visits Riley monthly for maintenance treatment. Harper has returned to school and to the soccer field.

“Honestly, every day I feel like I feel more normal because I’m growing my hair back and I really felt the feeling of being able to do stuff that other people get to do that don’t have cancer,” Harper said.

There was a time when Laura Weiger thought she wanted to be a doctor. Turns out, what she loved was working in a medical setting, helping patients and families navigate the twists and turns of treatment.

Weiger is relatively new to the heart transplant team at Riley Children’s Health. She started in March as the social worker for cardiac transplant patients.

But she’s not new to Riley.

Weiger worked as the social worker in the Cancer Center at Riley for eight years back in the early 2000s. After leaving Riley, she worked with smaller nonprofits and for Indiana Donor Network. Working with transplant patients today brings things full circle from her days at Indiana Donor Network.

What brought her back?

“Honestly, I think I was ready to get back into the interdisciplinary work within the hospital system,” she said. “This team and department actually match very well with how I practiced in the Cancer Center.”

The length of time spent following patients is longer, giving her the opportunity to get to know them as individuals and as a family unit.

She also enjoys building relationships with the transplant team.

“This is a very close team,” she said. “You don’t have a straight and narrow lane, but you do have your role, and there’s some crossover and working together that I really enjoy.”

When she put aside her plan to become a physician, Weiger, who has two daughters with her husband, Steve, realized she could make a difference through social work in a healthcare setting.

“Just understanding what it was about the medical field that interested me put me on a path to medical social work,” she explained. “I love interfacing with people, I love conversation, I love trying to understand how to click with them and how to get them to trust me so I can help them.”

As she settles into her new role, Weiger said her biggest challenge is gaining a better understanding of the heart itself.

“I’m still very much in a learning phase. I want to understand more; that’s my personality, but I’ll get there.”

Her major frustration, she said, likely mirrors that of her patients – the waiting, the not knowing.

In the midst of that, she continues to be proactive, connecting families with resources and helping them navigate challenges – whether it’s working with insurance, schools or caregivers or dealing with a financial crisis.

“My role is to help them work through barriers and navigate next steps, as well as maintain overall quality of life,” she said. “We want patients to be successful outside of getting a heart, ensuring they have the services that are important for them to succeed.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Jessica Hill is among the parents who are looking forward to the event. Her son, Cutler, spent seven months in the NICU after he was born at 26 weeks.

Jessica says the Riley NICU team became their family during that time. They saw the doctors, nurses and therapists more than they saw their actual family.

“I mean, they loved us through it when we had nothing else left to give,” Jessica said. “And, those were bonds that were created for seven months that we still communicate with today.”

Cutler is now seven years old. The family’s connection to Riley remains strong.

Riley Children’s is one of the few hospitals nationwide—and the only facility in Indiana—to offer a comprehensive, multidisciplinary care program for children with intestinal failure. PAIR provides access to novel lipids and new and emerging medical therapies, including intestinal growth factors to promote intestinal adaptation. When the need arises, the PAIR team works closely with the expert pediatric abdominal transplant surgery team at Riley Children’s—one of only eight centers in the nation to perform pediatric intestine or multivisceral transplants in 2022.

“Over the past decade, our PAIR team has worked to build our expertise and to continually advance our clinical practice through the development of evidence-based protocols and a commitment to quality improvement,” said Charles Vanderpool, MD, pediatric gastroenterologist and medical director of nutrition support at Riley Children’s. “The strength of our program lies in the expertise drawn from across our hospital—GI and liver specialists, surgeons, nurse specialists, dietitians, pharmacists and others—who contribute as members of our team in caring for children with highly complex medical and nutritional needs.”

Riley’s PAIR team has led the introduction of protocols focusing on safe administration of parenteral nutrition and newer lipid emulsions and protocols designed to help prevent complications, including liver disease. A recent clinical study conducted at Riley Children’s, “Lipid strategies to prevent intestinal failure-associated liver disease in neonates: A pilot trial,” earned ASPEN’s Harry M. Vars Award for the leading abstract submitted to ASPEN in 2022. PAIR team members also conducted a published review of pediatric patients receiving Smoflipid therapy that evaluated patient response and highlighted safety concerns.

Successful home monitoring program

Initiated by the Riley PAIR team in 2021, the SMART PAIR (Short bowel Monitoring at Residence Through PAIR) program allows patients to return home sooner while still receiving detailed monitoring and timely recommendations on feeding and IV nutrition.

“We're also developing a weekly text update program that’s sent to families requesting that they text an update back to us with how they are doing,” explained Dr. Vanderpool. “With these initiatives, we can continue to make advancements or changes in the care plan based on real data with the patient at home and not in the hospital.”

At any one time, the Riley PAIR teams monitors 30 to 40 patients on home parenteral nutrition. The team also follows “graduates” of the home parenteral nutrition (HPN) program, many of whom still require individualized nutrition plans and monitored nutritional supplementation. To help ensure life-sustaining resources for patients on HPN, the PAIR team is a leader in navigating and managing nutrition shortages and recalls. PAIR team members also participate in the education of residents, fellows and students across all disciplines at Riley Children’s.

The first step towards better patient outcomes is to get at the root cause of the problem. For many NICU patients that means making a genetic diagnosis. “With rapid whole genome sequencing, we’re able to make better clinical decisions about such things as targeted therapies, breathing and feeding support, and surgery to address congenital anomalies,” said Kristen R. Suhrie, MD, neonatal-perinatal medicine specialist and medical director of the program. “Results of this testing, whether positive or negative, help us determine the best path forward for these newborns—and for families, our comprehensive program provides a more thorough understanding of their child’s condition, guidance on care and even insight on future family planning.”

Dr. Suhrie, in collaboration with Riley colleagues in neonatology and genetics, developed a set of guidelines to aid clinicians in recognizing symptoms that may signal a genetic condition. When one or more of these symptoms is identified, the neonatologist consults with Riley geneticists. From there, the specialists determine whether whole genome sequencing or some other type of genetic testing is needed to help identify a root cause.

Since the guidelines were implemented in May 2022:

• 173 genetic diagnoses were made: 45% resulting from whole genome sequencing.
• 289 babies received whole genome sequencing (out of 1,503 babies treated in the three NICUs at Riley Children’s).
• Genetic disease detection rate increased 71% from 7% to 12%.
• Length of hospital stay decreased by 17 days for those patients that received a genetic diagnosis.

“Looking at the historical data, we’ve made a dramatic difference with this program in a short period of time,” Dr. Suhrie said. “We’re in the process of doing a thorough statistical analysis and are preparing to submit our findings for publication later this year.”

Additionally, Dr. Suhrie has formed a focus group within the Children’s Hospitals Neonatal Consortium to promote discussion and collaboration about the impact of genetic disease on NICU patients and the role and benefit of whole genome sequencing in this population.

“We feel it’s important not only for newborns at Riley Children’s to get this type of care, but for this to be implemented in NICUs across the country,” Dr. Suhrie explained. “We’re working to share what we’re doing with colleagues at other centers because we’re getting such amazing results and wonderful feedback from our families.”

In addition to family-focused care and support from other NICU parents, the Perinatal Genomics Program offers precision therapeutic care based on the genetic diagnosis and access to the Undiagnosed Rare Disease Clinic at Indiana University School of Medicine. This highly specialized clinic, launched in 2020, focuses on uncovering genetic answers when clinical testing is negative.

“Our program helps prevent many families from enduring what we call a “diagnostic odyssey” where they start their journey in the NICU but may not get a genetic answer for years,” Dr. Suhrie said. “That whole time they’re wondering what might be next and what other health problems may arise. Getting a genetic diagnosis early helps inform care and increase understanding of why their child has these medical issues and what to look out for in the future.”

The Perinatal Genomics Program at Riley Children’s Health is part of a nationally ranked Neonatology program that delivers specialized, evidence-based care to neonates in need of lifesaving services. Home to a Level IV NICU providing the highest level of care, Riley Children’s is No. 8 out of 46 U.S. centers* in the number of comorbidities present on admission, reflecting the complexity of the hospital’s NICU patient population.

*Children’s Hospitals Neonatal Consortium database

A pediatrician discovered Cutler, her son, had a large VSD one day after he was born. They knew he would eventually need open heart surgery to repair the hole in his heart.

Mary Beth says she is very grateful to Dr. Mark Turrentine, who was able to successfully perform the surgery on Cutler.

“Seizures can appear as dramatic, full body shaking with stiffened muscles. But they can also take the form of subtle, abnormal sensations or a silent stare off into the distance. Your child may also experience confusion, memory and language problems,” said Dr. Makram Obeid, pediatric neurologist at Riley Children’s Health. “In the first month of life, more than 80% of newborn seizures can be silent and only detectable on electroencephalogram (EEG) tests.”

When children have the brain disorder epilepsy, they have a predisposition to recurrent seizures. Epilepsy is the most common neurological disorder in children in the United States, and it can have several causes.

“In children, about half of the epilepsy cases are genetic, and the other half are caused by brain lesions and acquired injuries, like a neonatal (newborn) stroke, traumatic brain injuries or infections that affect the brain. These can lead to epilepsy, sometimes months or years later,” Dr. Obeid said.

It is often difficult to predict when a seizure may occur in a child with epilepsy. What triggers seizures in patients with epilepsy can vary, and include things like emotional stress, physical exhaustion, poor sleep and fever. In some children with epilepsy, seizures can even be triggered by environmental factors like specific light patterns.

Diagnosing epilepsy in children begins with a visit to the neurologist to discuss your child’s history of seizures. The neurologist will order tests to identify where in your child’s brain the seizures are originating. Tests include an EEG to measure the brain’s electrical activity and magnetic resonance imaging (MRI) to look for a possible lesion or scaring from brain injuries, such as trauma or infection.

“In diagnosing epilepsy, a detailed medical history and physical exam will typically lead you to a clinical suspicion of epilepsy, and the imaging along with EEG helps you make the diagnosis,” said Dr. Saul Wilson, pediatric neurosurgeon at Riley Children’s Health.

“There is not one, single test for epilepsy,” Dr. Obeid said. “The diagnosis of epilepsy is based on a history of seizures, but the results of these tests support the diagnosis and help us figure out the underlying cause and where the seizures are coming from.”

Once a physician has established an epilepsy diagnosis with your child, the first step in treatment is usually controlling seizures through medication.

“We begin with anti-seizure medications that have the fewest side effects at the lowest dose possible,” Dr. Obeid said. “At times, the cause of the epilepsy calls for additional treatments or interventions. For example, this can be resecting a tumor or treating an underlying auto-immune disease.”

Doctors will work with you and your child to minimize anti-seizure medication side effects, like drowsiness, fatigue and changes in appetite and sleep patterns. If more than two medications fail to control the seizures, additional tests are usually performed to see if a child qualifies for more specific types of treatments and interventions, including epilepsy surgery.

“Before we go into surgery, we do detailed imaging on our patient to localize the source of seizures so we can improve or completely eliminate a patient’s seizure activity. Imaging may help us identify a brain tumor, a vascular lesion or a congenital malformation causing the seizures,” said Dr. Wilson.

There are several surgical options to treat epilepsy, depending on what is causing the seizures and where in the brain the seizures begin.

• Ablation is a minimally invasive way to use a laser to treat lesions in the brain that are causing seizures.
• Vagus nerve stimulation (VNS) involves implanting a device under the skin that delivers direct electrical pulses to the brain through electrodes in the vagus nerve in the neck.
• Responsive neurostimulation (RNS) is a surgical treatment where an implanted device detects seizure onset and sends electrical stimulation to the brain to prevent seizures.
• Resection surgery removes an area of the brain responsible for seizure activity.
• In some cases, corpus callosotomy reduces seizures that begin on one side of the brain and spread to the other by cutting the band of nerves (corpus callosum) that connects the two hemispheres of the brain.

“Most often, the initial treatment for epileptic seizures will be medications, but occasionally imaging may help us localize a new brain tumor that must be treated surgically up front,” Dr. Wilson said.

If you think your child may be experiencing seizures, reach out to your child’s physician to discuss neurological care. When possible, document as much as you can about the seizures to help your child’s physicians understand what is causing the episodes and how best to treat them.

Samantha Hacker and Jamie Purvis have been cardiology patients at Riley Children’s Health their entire lives, but they met for the first time just this year.

Now they consider themselves “heart sisters.”

Hacker, 30, of Bloomington, and Purvis, 32, of Wabash, were admitted to Riley Hospital for Children several months ago, each waiting for a heart transplant.

For now, Riley is their home, and they’re doing their best to stay strong and ready for lifesaving surgery.

One of the most important things they do is help each other through the ups and downs of living with heart failure.

“To have someone who understands all the little feelings that you never thought were normal, it makes such a difference,” Purvis said. “Sam is a very caring, generous and open person who will always be there for me, who will always offer support, no matter if it’s an ugly day or we’re having fun. She’s there.”

Hacker feels the same way.

“I look forward to talking to Jamie because I know at least we’re going to be laughing about something. She can relate to how I’m feeling, and we can talk about our experiences. I’ve never had that person I could talk to about my heart issues that has actually been through something similar,” she said.

It’s not the first time adult patients have spent months at Riley, nor is it the first time that more than one adult has been inpatient waiting for a heart transplant at the same time.

Riley treats congenital heart defects in kids through adults – up to and including transplant.

Both were diagnosed shortly after birth with heart defects – Hacker with tricuspid atresia and hypoplastic right heart syndrome, and Purvis with hypoplastic left heart syndrome, atrial septal defect and ventricular septal defect.

They’ve had multiple surgeries, most performed by the esteemed Dr. John Brown, who retired in 2020 but still occasionally assists in the operating room.

“He has meant so much to me growing up,” Hacker said. “Just seeing him again would be nice.”

Hacker and her husband, Jon, have a daughter, Kaylee, who has made new friends with pediatric patients on the unit since her mom has been at Riley.

Purvis shares four stepchildren with her wife, Gena McDonald.

Together, the women and their spouses have formed a bigger family that includes other patients and parents on the Heart Center.

“We all look out for each other, in every way we can,” McDonald said. “Without us bonding together like we have, it would be hard to get through the day.”

They enjoy pizza and movie nights, making art, playing games and visiting with loved ones while they wait for word that a good heart has been found.

The two have had several offers, even matching on the same heart at one point, but none have been quite good enough for surgeons to take the risk.

“I told my husband this is my one and done,” Hacker said about transplant. “I won’t do it again. I’ve been a heart patient my whole life and I’m just tired. I’ll do this and that’s it.”

Committing to staying at Riley until a donor heart becomes available was rough for Hacker, who misses being home with her family.

“It’s hard to be a mom when you can’t be present all the time. When I was a child and here for months at a time, I was still carefree,” she said. “It was very different. Now, I have responsibilities outside of here and all these things running through my mind.”

One of those responsibilities was finishing her degree in psychology. She completed her course work last week. Hacker already has a degree in early childhood education, but she wanted more.

“I don’t want to be defined by my health. That’s my big thing, pushing through,” she said. “I want my daughter to be proud of me. I want to make a difference in the world, even if it’s something small.”

There’s nothing small about Hacker’s impact on the unit. She befriends pretty much everyone she meets, including the younger patients. She works on crafts with them, watches movies with them and plays games with them. She wears a necklace made by a young patient that says “best friends.”

Still, she and Purvis can’t help but be apprehensive about transplant surgery and life after transplant. For their entire lives, they’ve been told what they can’t do, which snuffed out some of the joy of being a kid.

Purvis, who celebrated her 32^nd birthday on the unit last month, said she sometimes struggles with the idea of receiving someone else’s heart.

“It’s beyond what I can really speak to,” she said. “There are no words I can give it that do it justice.”

And having a full functioning heart, well it’s hard to even imagine what that will feel like, both say.

“You’re going to be able to do all these things that you can’t regularly do, and I don’t know how that’s going to feel,” Hacker said. “Like walking my dog normally. I don’t know yet. I’m so used to my heart and knowing what my heart needs. It’s going to be a big 180.”

Transplant cardiologist Dr. Robert Darragh and transplant coordinator Debbie Murphy have been anchors for the two since Hacker and Purvis were little girls.

Hacker remembers telling Murphy more than once that she couldn’t retire until Hacker gets a new heart.

“I just love that woman,” Hacker said. “She is wonderful, making herself available to talk about all my concerns.”

And Dr. Darragh has seen them both through many ups and downs. His presence is always reassuring, they said.

“Dr. Darragh wears his heart on his sleeve, and all of his patients mean something to him,” Hacker said. “He listens, and he hears you when you’re all in your feelings.”

“You can tell he really cares about you, not just as a doctor,” Purvis agreed. “He forms a bond. He takes the time to get to know his patients and actually have that rapport. He’s very valuable to both of us.”

After transplant, the two women will transition to IU Health Methodist Hospital for care, but they’ve promised to keep in touch, even talking about taking a trip to Disney World some day to learn what it feels like to be a kid.

Riley Children’s Health is ranked among the best in the nation by U.S. News & World Report for its cardiology and heart surgery programs.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

To mark the special moment, Josiah rang the bell in the Riley Hospital for Children hematology/oncology clinic surrounded by his doctor and care team.

Josiah was diagnosed with a low-grade glioma tumor in March 2022. He had been dealing with persistent headaches. One day, the headaches were accompanied by vomiting. Josiah’s mom took him to the emergency room and eventually doctors uncovered the tumor in his brain.

While Josiah still has a few more steps in his cancer journey, this family is thrilled to be done with chemotherapy.

A 9-year-old Fishers boy has become the first pediatric patient in the state to undergo a new therapy to prevent the onset of stage 3 type 1 diabetes.

Colin Ozdemir, son of Gemi and Kelli Ozdemir, received the 14-day infusion of teplizumab at Riley Hospital for Children earlier this month.

The drug received FDA approval in November 2022, and Riley, which through Indiana University School of Medicine was among multiple sites around the country involved in the clinical trials, is the first healthcare organization in the state to offer it to pediatric patients.

“This new drug is as close to a cure as we’ve seen,” Kelli Ozdemir said last week. “If they have figured this out, they’re going to figure out a cure. We are so close.”

The mother of four, who sits on the board of JDRF (Juvenile Diabetes Research Foundation), knows the toll that type 1 diabetes takes on the body. Her two older daughters, ages 15 and 13, have the disease, a chronic condition in which the pancreas produces little or no insulin to regulate blood sugar levels. The oldest was diagnosed at the age of 4.

Ozdemir has had her younger two children screened regularly, except during the pandemic, and she could see that Colin’s blood sugar numbers were worsening.

Learning that Riley would be the first in the state to offer the newly approved treatment was exciting, to say the least. But she and Colin’s dad did their research, talking to doctors around the country who are knowledgeable about the drug and connecting with the mother of a patient who participated in one of the drug trials.

“It’s very new, so it came with some risk but not a lot of documented serious side effects or complications,” she said. “I would not be able to sleep at night if I didn’t do everything I could to keep Colin from having to go through what the girls do. And if we didn’t do this drug, he would probably be on insulin right now.”

Riley pediatric endocrinologist Dr. Jamie Felton has walked with the Ozdemir family during this pre- and post-period of treatment and has been involved in type 1 diabetes research since 2014.

She explains how the new drug works:

“In type 1 diabetes, immune cells that normally fight infection mistake the cells that make insulin as foreign and destroy them in the same way that they would destroy bacteria or viruses. To do this, these cells need to communicate with other cells and receive the correct signals to attack. Teplizumab is an antibody that blocks these cells from talking to each other, so they cannot attack.”

The one-time treatment buys people time, in effect, without having to worry about living with type 1 diabetes. The hope is that it will stave off the disease for years.

As a physician and a researcher, Dr. Felton is thrilled with the opportunity to help more patients delay the day when they might have to start taking insulin to control their blood sugar levels.

As a person with type 1 diabetes herself (diagnosed at the age of 11), she has focused her career on this very thing – stalling the disease so it cannot rob another patient of their childhood.

“The focus of my job is taking care of patients with type 1 diabetes, and when I’m not doing that, I’m in the lab trying to figure out what is causing it so we can develop effective therapies,” she said.

While the disease has a genetic component, most people who are diagnosed don’t have that first-degree relative history, Dr. Felton said.

Ozdemir encourages those who do have a family history to get screened.

“I want to scream from the rooftops that this drug works,” she said. “If you have type 1 diabetes in your family, screen the rest of your family. It’s the only way you’ll know if you’re eligible for this treatment. And it could change your life.”

For years, researchers, including Dr. Linda DiMeglio of Riley’s Diabetes and Endocrinology team, have been trying to intervene and modulate the immune system to see some sort of effect, and nothing has worked – until now, Dr. Felton said. Trials were conducted from 2010 to 2016, and the first results were published in 2019.

“To be able to see the fruits of some of those efforts result in something that is changing lives right now is really, really gratifying,” the physician said.

For Colin, who will turn 10 next month, it is lifechanging, his mom said.

“We’re trying to get to the point where he can live life without even thinking about diabetes because right now, he doesn’t have it. He doesn’t need insulin; he doesn’t need to worry about it.”

Still, he wears a glucose monitor so she can see what’s going on.

Even if one day her son becomes dependent on insulin, every day that he doesn’t is a gift because it means his body is spared the toll the disease takes for a little longer, and he doesn’t have to lose his childhood to worry, she said.

“It means so, so much.”

Even delaying the onset for two years would be a win in Dr. Felton’s eyes.

She’s hoping for more, “but any time we can buy will be beneficial,” she said. “The longer we can preserve the body’s ability to make insulin, the better outcomes those people have when they’re diagnosed, and they manage the disease better later on.”

Type 1 diabetes is not just about taking insulin, Dr. Felton explained. It’s something you’re always thinking about. Everything you do – diet, hormones, stress, exercise – everything affects the blood sugar.

“To have more time without that mental burden is good.”

It also has reinvigorated research efforts, she said.

“It’s this combination of seeing people’s lives being changed and excitement to move the research forward that the field hasn’t seen in quite a while.”

There are more patients in the pipeline who could be eligible for the treatment at Riley, Dr. Felton said, but one of the challenges is identifying patients who qualify.

“Making people aware that there is an opportunity to change the course of disease is really important,” the physician said.

For her part, Ozdemir is grateful for the chance to improve her son’s life, even as she struggles with how the disease has affected her entire family’s life.

“I hate it and I wish we didn’t have to deal with it,” she said. “I have days where I’m mad at the world and mad that this happened to my kids, but I get back up just like any mom and do it again the next day.”

Her older girls are happy that their little brother has the chance to beat back type 1 diabetes, even if they didn’t get that same opportunity.

“They rally around each other when it comes to diabetes.”

Colin will return for blood tests in October, then see Dr. Felton again in February for repeat screenings.

Five-hundred days.

That’s how long Ava Graham has been at Riley Hospital for Children waiting for a heart transplant. Actually, today marks 501.

When she arrived in the spring of 2022, she was in the second grade. Since then, she has completed second and third grade and recently started fourth grade under the tutelage of Riley educational liaison Lindsay DeWilde.

Last September, Ava celebrated her ninth birthday with a small party at Riley. Next month, she’ll celebrate again with family and close friends at the hospital when she turns 10. She has chosen Zelda as her birthday theme.

Jackie and Jami Graham of Indianapolis never dreamed their little girl would still be waiting, nor that they would still be in limbo, seeing each other in passing as they take turns staying with their daughter for days and nights on end.

But because of the medications and treatment Ava receives, it’s safer for her to remain in the hospital while she waits.

“We’re here for the long haul,” Jackie Graham said last week.

It’s something they committed to early on – to give Ava the best chance at transplant – but the couple thought it would be a matter of weeks or months.

Last April marked one year.

Ava, who was born with hypoplastic left heart syndrome, is a veteran of many surgeries, but so far, transplant eludes her. She has high levels of antibodies in her blood, making it hard to find a suitable donor.

“We’ve had upwards of 20 offers, but none were the right one,” said Jami Graham, who updates Ava’s followers on the Facebook page Amazing Ava, Heart Warrior.

Surgeons won’t accept a heart that’s less than a perfect match for their patient due to the risk of rejection.

Still, Jami said, “she could get a heart anytime.”

So, the family stays ready, as does transplant cardiologist Dr. Robert Darragh, transplant coordinator Debbie Murphy and the surgical team.

How does a 9-year-old deal with this lengthy wait, spending birthdays and holidays in the hospital while her beloved cats wonder when she’ll come home?

She keeps herself plenty busy – playing video games, watching movies, doing her physical therapy and making friends with patients and care team members.

“She’s pretty smart,” Jami said. “She understands why she’s here and why it’s taking longer because of these antibodies. She knows why we had to give her some chemotherapy drugs to try to lower the antibodies and how bad it’s made her feel. She gets it.”

The almost-10-year-old has been around adults a lot, her mom said, and she listens when they talk.

She’s also watching and waiting. Waiting for her turn even as friends on the transplant unit are matched with hearts and she has to say goodbye.

“I think it’s getting harder for her,” Ava’s mom said. “For us, it’s bittersweet. We get so excited for the families that get the call, but we do wish that it was our turn.”

Riley Children’s Health is ranked among the best in the nation for its cardiology and heart surgery program.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

Amazing Ava waits for a new heart - The girl with her own hashtag is making herself at home in the hospital for as long as it takes.

Birthday bash celebrates girl waiting for “hero heart” - Nine-year-old Ava is surrounded by those who hold her close in their own hearts as she marks five months on the transplant list.

Jill Landis Jha’s 5-year-old daughter had been sick for a couple days – sore throat, diarrhea, fever.

Jha did what most parents would do. She took Anjali to her pediatrician, where they did a strep test, which came back negative.

That was on a Tuesday earlier this month. By the next day, the preschooler was vomiting, and the diarrhea was worse.

Fast-forward a couple days, and Anjali was admitted to a hospital near the family’s home in Goshen, Indiana, where the little girl tested positive for an E. coli infection. The bacteria can be found in food, in the environment and in the intestines of people and animals.

A person can become infected with E. coli by coming into contact with human or animal feces, which can happen when drinking water or eating food that’s contaminated, or from an infected person who hasn’t washed their hands well after a bowel movement.

That might be scary enough, but a stool and blood test later pointed to a rare complication in Anjali called shiga toxin-producing E. coli associated hemolytic uremic syndrome (HUS), which can cause kidney damage.

She was transferred via ambulance to Riley Hospital for Children, where Dr. Myda Khalid, director of the pediatric nephrology fellowship program, oversaw some of her treatment during her weeklong stay.

“We specialize in taking care of children with diarrhea-positive HUS,” she said. “Here, we have a team, we know how to monitor patients closely, so that if anything does happen, we are prepared to handle it.”

About 15% of children who get bloody diarrhea after an E. coli infection get HUS, according to Dr. Khalid, and of those, as many as two-thirds need dialysis.

Anjali was lucky. She avoided dialysis, but she did require two blood transfusions, in addition to constant fluids to keep her hydrated.

The warmer months are peak season for shiga toxin E. coli HUS, Dr. Khalid said. Kids, in particular, are outdoors more, petting farm animals, swimming in lakes or untreated pools and participating in other outdoor activities where infection risks can be higher.

Proper handwashing for at least 20 seconds after potential exposure to E. coli bacteria, including after using the restroom, is the best way to prevent infection and cross-contamination.

In Anjali’s case, state health department investigators hadn’t determined how she acquired E. coli as of last week, but her mom said they had visited a hobby farm where they interacted with some of the animals. They’d also visited restaurants, where there might have been cross-contamination, and they’d been swimming in a saltwater pool.

Anjali spent a week on the stem cell unit at Riley, a stressful time for Jha, but she looks back with gratitude, despite a rocky start.

“What stood out to me was the ability of the doctors to be flexible, to take notice of the situation and make decisions accordingly,” she said.

“Knowing that Dr. Khalid has done the research made us feel really good about going to Riley,” Jha added. “The medical students, the fellows, the pediatric nephrologists were all very helpful in explaining things and answering questions. And they explained it to my older girls in a way they could understand. Their bedside manner was phenomenal.”

For her part, Dr. Khalid said the fact that Anjali received quick treatment made a difference.

“It was good that Anjali was already admitted to the hospital, so they were watching her very closely. If they hadn’t done bloodwork when they did, who knows when this would have been caught. … Then they called us, and we got her to Riley,” the physician said.

HUS is rare. Riley sees only five to 10 cases a year, Dr. Khalid said. It doesn’t always follow an E. coli infection but can also occur with some medications and cancer treatment.

The fact that Anjali was able to avoid dialysis speaks well for her complete recovery.

“She is going to do very well,” Dr. Khalid said. “We are confident that she will not have long-term side effects. For children who end up on dialysis for several weeks, we worry about long-term kidney damage, but the fact that she did not require dialysis puts her in a very favorable outcome.”

As a caution to parents, Dr. Khalid said to be vigilant when young children develop sudden onset of bloody diarrhea and vomiting and complain of stomach pain or fever.

“Go to your doctor and request a stool culture,” she said. “Go sooner rather than later so they can guide you and … tell you if this is E. coli or not.”

While there are many kinds of E. coli diarrhea infections, not all are shiga toxin-producing E. coli, she said, meaning there’s less risk of HUS, but it is more common in children.

Jha said her daughter is doing well at home. She woke up the day after she was discharged from Riley, ready to play with her cousins. But precautions like frequent handwashing and staying hydrated remain in place.

She wanted to share her family’s story to bring awareness to the dangers of infections like Anjali suffered and to encourage parents to advocate for their child.

“Just know there are certain things you can manage at home, but when it gets unmanageable, like loss of fluid and not being able to stay hydrated, know when to take your child in or call the doctor,” she said, “and insist on a stool test or blood test to make sure your kid is OK.”

The experience has made her more aware of the need for more research into pediatric illnesses, as well as the constant demand for blood donations.

“She got two blood transfusions. I don’t know who the blood came from, but I’m so thankful that they took time out of their day to do that.”

What’s CHD?

Congenital heart disease (CHD), also called a congenital heart defect, describes anything that affects your baby’s heart as it formed in the womb. This includes a wide variety of diagnoses, including problems with heart valves or heart muscle, a hole in the heart, issues with blood vessels moving blood flow to and from the heart or a combination of these, like hypoplastic left heart syndrome. Although it begins in the womb, some CHD diagnoses can be made at any time in a child’s life, including adulthood—though it’s rare.

“CHD presents itself in a few different ways: we can diagnose it before the baby is born and choose to deliver that baby at a place like Riley, where they can get immediate cardiology attention,” said Dr. Larry Markham, a pediatric cardiologist at Riley Children’s Health. “Or it shows up in the first critical weeks of life after a baby goes home, when the parents notice poor feeding, low oxygen or fast breathing. CHD can also appear years later in symptoms like poor growth, rapid breathing or a heart murmur. Even adults can present with a CHD diagnosis.”

CHD is the most common birth defect in children, affecting one in 100 babies. And while diagnosis and surgery can occur early in your child’s life, it’s a condition they will likely manage throughout their lives.

“CHD is a lifelong disease that doesn’t always end after surgery,” said Dr. Elle Geddes, a pediatric cardiovascular geneticist at Riley. “Your child likely will need to have cardiac monitoring throughout their life, and there could be other associated health concerns. That is one reason why early assessment with a medical geneticist and genetic testing is such an important part of care, to see if we can identify something that helps us take better care of a child.”

Why is it important to have specialized care for CHD?

While CHD is common, treating the full range of heart problems requires experience and resources. The more patients a pediatric cardiologist treats, the more experience they gain. The availability of resources in a major heart center like Riley include a cardiovascular intensive care unit with dedicated cardiac intensivists, specialized cardiac imaging and diagnostics, home monitoring programs, supportive services for growth and development and access to cutting-edge genetic assessments also helps ensure your child has the focused resources they need.

“We’ve had congenital heart care at Riley for over 70 years, so we’ve seen the rare and unlikely cases, and we’ve learned to navigate the uncertainties that each individual patient may face,” Dr. Markham said. “Most places treat a baby in the neonatal ICU, where cardiologists come in to provide care. At Riley, we have a cardiac floor where everyone committed to heart care comes together to care for your baby, all in one place. We put your baby’s needs first.”

It's also helpful to seek a CHD program that brings together many specialties—like cardiology, neonatology, genetics, rehabilitation and surgery—to offer a full spectrum of care.

“The more minds the better. Every patient that undergoes surgery here at Riley has their case reviewed by dozens of talented, dedicated specialists who care for patients with CHD from all different angles,” Dr. Geddes said. “Large healthcare centers can offer all the necessary pieces to the puzzle to provide the best care possible.”

What procedures and treatments can I expect my child to undergo for CHD?

CHD encompasses so many different types of heart problems that your child could need anything from a very straightforward procedure to a more complex, lengthier hospital stay. If you learn about your child’s diagnosis prior to birth, visit the hospital and learn what to expect and what service are available for CHD support once your child is born.

“We invite parents to tour our Heart Center and get a sense of where they’re going to be and what it looks like. It’s always daunting when a child undergoes surgery, so we try to engage families in the discussion, and our Child Life and other services are here to support the parents and siblings,” Dr. Markham said. “Be sure to line up family members who can help out with whatever you need at home while your child is receiving care.”

It can be a stressful and challenging experience for parents and families when a child is undergoing treatment. Be sure to ask for what you need and talk to your care team if you feel overwhelmed or have questions.

“Also, be kind to yourself. You’re going through this, too. We want to support you wherever we can, whether that’s through social work, financial navigators to help with health insurance, meal cards or a just a blanket,” Dr. Geddes said. “In pediatrics, we care for the whole family because kids need you to do well in order for them to do well.”

How can I support my child’s mental and emotional needs during CHD care?

Simply having an awareness that CHD comes with mental health risk factors is a big first step to supporting your child through their medical care. Some children need the support of therapy as they go through their treatment journey, and others do not. Medical care can add stress to family dynamics, especially for parents. Knowing that stress and time in the hospital can affect your child’s mood and learning at school can help you prepare resources ahead of time. At Riley, those needs can be identified during neurodevelopment follow-up appointments.

“We offer neuropsychiatric evaluations for school-age children to help identify where their strengths are, how they learn and how to work with the school. If your child’s a visual learner, we should tailor an approach for visual learning,” Dr. Geddes said. “We have a psychologist who focuses on patients with CHD. Several of us in the program, including myself, have CHD, which gives us unique insight to the journey. Several of our team members have been cared for at Riley since they were infants or children. There are also a lot of parent resources and support groups to vent and share with someone who’s lived the same experience.”

Recently, the girls reunited for the first time to celebrate their half birthday! They’ve spent their entire lives in the NICU.

Emilee said this special moment in the Riley NICU allowed them to finally capture a photo as a family of four with their micro preemies.

“Aria found out that she is not an only child and you can see how she felt about that,” Emilee said jokingly.

Aria is the big sister. Doctors at another hospital discovered she had a brain bleed soon after birth. This required Aria to be transported to Riley Hospital for Children for the level four NICU.

Both twins have chronic lung disease. So, Rylee was also transported to Riley back in March.

“The day we can bring them home is getting closer and we cannot wait to finally start our lives together at home,” Emilee said. “I’m so proud of my girls and so thankful for our village, including our Riley family.”

For 10 years, they had tried to have children. When Kelsey Frey learned she was pregnant with quintuplets, she and her husband, Jeremy, were over the moon.

But they were cautious too. They’d already suffered two miscarriages, and they knew there were serious risks involved with carrying multiples, especially five babies at one time.

When Kelsey began showing signs of pre-eclampsia (dangerously high blood pressure that can be fatal to moms and babies) at 22 weeks’ gestation, she was admitted to the Maternity Tower at Riley Hospital for Children.

The hope was that delivery could be halted until at least 28 weeks, but at 24 weeks and 2 days, on Oct. 25, 2022, the Frey quintuplets were delivered via C-section by Dr. Christopher Mernitz.

Sadly, one of the quints, Brooks, was stillborn. Two more, Bailey and Liam, would face insurmountable health challenges and pass over the next several weeks.

It’s more grief than any family should have to absorb, but the Freys found comfort and support in their family at home in northern Indiana and in their new family at Riley.

Kelsey Uitermarkt and Makayla Howard were two of the NICU nurses who cared for the babies. Their impact was so strong that Jeremy and Kelsey Frey nominated them for DAISY awards, recognizing nurses who exhibit excellent clinical skills and compassionate care.

“We wanted to share our gratitude for a couple of exceptional nurses who truly went above and beyond for our family as we navigated 129 days of hardships in the NICU,” Jeremy wrote.

He went on to describe how he and his wife, who live nearly three hours away from Riley, struggled to be present for their surviving babies in the NICU, Luke and Avie, while also mourning the loss of Brooks, Bailey and Liam.

In addition, the couple have three older children at home whom they adopted.

“Oftentimes, Kelsey and I would see each other in passing or spend a night or two together at the hospital, but it was important that one of us was at the hospital every day,” Jeremy said.

Holding the family together at Riley was their care team – doctors, nurse practitioners, respiratory therapists, social workers, NICU Nest, child life and bedside nurses, particularly Uitermarkt and Howard, both of whom joined the Maternity Tower NICU team two years ago.

The two nurses would spend nearly every shift with one of the Frey babies until Avie and Luke were discharged in March. Howard began caring for Luke on his second day in the NICU.

“Other nurses would tell us they never got a chance to have Luke because he was ‘Makayla’s boy.’ This gave us such peace that somebody loved our babies this much,” the couple said.

Meanwhile, Uitermarkt had Liam that first week before becoming Avie’s primary nurse a few days later.

“Avie became my girl,” Uitermarkt said. “She had the sweetest little face. I just fell in love with her.”

Uitermarkt was with Avie across the hall around the time Liam passed away Nov. 27. (Bailey had died 12 days earlier after undergoing surgery for necrotizing enterocolitis.) Both Uitermarkt and Howard comforted the shattered parents and helped with the older Frey children, who had come to see their brother Liam “this side of heaven.”

“I remember thinking, I need to do everything in my power to make sure they get Avie home,” Uitermarkt said. “They had lost three kids already and they kept showing up. They showed up the next day to see Luke and Avie. They’re showing up for their kids at home, they’re showing up for their kids here, and they’re walking through the hardest thing they’ve probably ever had to walk through.”

Jeremy remembers how, throughout the ordeal, both nurses cried with them, acknowledged their pain and encouraged them to keep going.

“Makayla had a strong love for our children,” he said. “She was there when our Luke boy opened his eyes. She immediately grabbed the big picture of Kelsey we left at the hospital so he could see his mama first. She celebrated their 100th day of life with us as well. She was their biggest cheerleader.”

Uitermarkt also went above and beyond, he said.

“She was made for this job. She lights up the room. She was just as kind to us as she was to the babies, always talking to them and explaining everything to us. We appreciated it as it was all new and scary at first. Nurse Kelsey loved them endlessly.”

For her part, Uitermarkt said she wouldn’t be the nurse she is without Avie.

“She helped improved my clinical judgment and my critical thinking, but she also reminded me why I became a NICU nurse.”

Kelsey Frey remembers one night when she had been up late holding her babies, then laid down to get some sleep. She awoke a few hours later to the gentle sounds of Uitermarkt and Howard talking to the babies.

“Kelsey was holding Avie, and Makayla was holding Luke. To wake up and see that they were already getting love and attention made us happy,” Kelsey Frey said. “Knowing they were taken care of and loved gave us some peace.”

It was during this time that the two nurses, who had been friends and co-workers before, became more like sisters, they said. And the Freys became an extension of their own family.

“They took Kelsey and me into their family,” Howard said. “Those babies and that family made me a better nurse.”

Even when they weren’t assigned to one of the Frey babies, the nurses would drop by their rooms to check in and celebrate milestones like getting their breathing tubes out or trying their first bottle.

They made crafts, often using the babies’ hands and feet, that filled their hospital rooms, with some now having a place on the walls of the couple’s home.

Luke and Avie Frey, who weighed just over 1 pound, 5 ounces each at birth, have been home for five months now and are thriving.

“They are big and healthy,” Kelsey Frey said.

Luke weighs 14 pounds, 4 ounces, and Avie is 14 pounds, 2 ounces.

They continue to see the BPD clinic at Riley (bronchopulmonary dysplasia) but have “graduated” from other specialists’ care. Each time they return to Riley for follow-up appointments, the Freys say it feels like going home in a way.

“It was our home away from home,” Kelsey Frey said. “When we come back, we see so many people who remember us and still greet us.”

Two weeks ago, the couple brought their babies up to the NICU to see the team again, a highlight for Uitermarkt and Howard.

“Makayla and I both agree, when we know we’re seeing Avie and Luke, it feels like Christmas morning,” Uitermarkt said. “Just to see how far they’ve come is insane. They are truly little miracles.”

Both nurses say none of it would have been possible without the entire Riley team and collaboration with the parents.

“Our team is absolutely incredible,” Uitermarkt said. “We were quite organized for these kiddos’ arrival, but the heart that the team poured into this family and wanting to do what was best for these kids is evident in every decision they made along the way.”

And the Freys are “incredible parents,” she added. “They were always so kind and gracious, but they still advocated for their kids when appropriate. They are the ultimate NICU family.”

Howard, who was present for both admission and discharge, agreed, acknowledging the “strength and compassion” the couple showed for their children in the NICU and at home, as well as the nursing staff, the medical team and other families in the NICU.

“They were a smiling face for other families and were able to support others going through similar experiences,” she said. “I think it was extraordinary the love and compassion this family showed other people in moments that a lot of us cannot even imagine.”

After 4½ months in the NICU, leaving Riley was a celebration for the Freys, though not without some tears.

“One of the saddest parts was leaving behind nurses who became family,” Jeremy said. “They encouraged us and truly carried us through some of the darkest moments of our life.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

"They develop a trust with each of us, knowing that their baby is safe even if they can't be here all the time," Emma said about the NICU parents she's gotten to know.

The working diagnosis is that Divinity experienced an amniotic fluid embolism, which causes an allergic-like response from the mother when the baby’s amniotic fluid enters the mom’s bloodstream during labor.

The condition causes "cardiovascular collapse" in which the heart stops beating, lungs stop working and everything shuts down, according to Dr. Nikki Scott who delivered Divinity's son. This rare pregnancy complication also causes intense bleeding. This required Divinity to receive more than 270 units of blood. Additionally, Divinity had be put on ECMO, which is a machine that acts as the heart and lungs to give a patient time to stabilize.

This situation unfolded during an overnight shift. The specialized labor and delivery team was ready to rush Divinity into the operating room, where she required an emergency hysterectomy.

Three months after this ordeal, Divinity returned to the Riley Maternity Tower where she reunited with members of her care team.

“It's truly a blessing,” Divinity said. “Because without this hospital, I would not be walking in here. I just feel like God put me here. Because, you know, he knew that there will be a team of doctors that can handle whatever was going to be thrown.”

"It was a full circle moment," said Dr. Scott. "This was the hardest day of my career, and I will never forget April 7. And, I'll never forget Divinity's face and her family. And so to see them doing so well, to see them thriving. You know, that's why we do what we do. That's why we, you know, wake up every morning and work the long hours to prepare. It's for moments like these."

“It was really awesome to be at the graduation party and tell people in person that we got the call,” Christina Fromm said as she sat by her daughter last week at Riley Hospital for Children.

“The call” was lifechanging. On the other end was transplant coordinator Debbie Murphy, who was on call that July weekend, with the long-awaited news that there was a donor heart waiting for Fromm’s daughter, Abigail.

There was only one problem. And it was a big one for Abi, 18. She was about to host her high school graduation party. If you remember being a teenager, perhaps you can understand her perspective.

Excited for the heart but a little bummed that she would have to miss the party, she negotiated a little more time. Doctors at Riley found a way to ensure that Abi was able to celebrate not only her new heart but her high school graduation, two huge milestones for the Fort Wayne teen.

As long as she cut the graduation party short and arrived at Riley by 8 that evening, she could surprise her party attendees with the news, giving those close to Abi and the Fromm family even more of a reason to celebrate.

This call came three months after the first call received back in April, when Abi was set to receive a transplant, but Riley doctors rejected the heart. So instead of spending the weekend in surgery, Abi danced the night away at her senior prom.

In fact, Abi had been dancing through life with seemingly no symptoms or clues that she even had a heart condition for nearly 17 years. She played the saxophone in her high school’s marching band and played in the backup band for show choir. When she was younger, she played softball and basketball.

In February 2022, she began experiencing fatigue and shortness of breath and went to a hospital close to home in Fort Wayne, before having her care transferred to Riley in Indianapolis.

Abi was diagnosed with dilated cardiomyopathy, which causes the heart chambers (ventricles) to thin and stretch, making it hard for the heart to pump blood to the rest of the body. Initially, there was no conversation about transplant, because medication can manage a dilated cardiomyopathy diagnosis in some patients.

In Abi’s case, however, medication was not the answer. In May 2022, she had an LVAD (a ventricular assist device that helps pump blood from the lower chambers of the heart to the rest of the body) placed by Dr. Mark Turrentine to get her through until it was time for a transplant.

Being in the hospital two hours from home for weeks at a time was rough for the teen and her family. Her dad, Alan, would visit every weekend, but he had to go back to Fort Wayne for work during the week.

“It was hard on everyone in my family,” Abi said, including her young niece and nephew, whom she adores.

Riley cardiothoracic surgeon Dr. Jeremy Herrmann, who performed Abi’s transplant with assistance from Dr. Mark Rodefeld, said the teen’s heart likely was deteriorating over time, even though she wasn’t aware of the problem.

“We see patients every year like Abi who reach their teenage years and something dramatic or even catastrophic happens, and it is discovered their heart is very weak,” Dr. Herrmann said. “Over the last few years, one option we’ve had is to support some patients with a mechanical device called LVAD, in this case allowing Abi to go home and finish high school before being listed for transplant.”

While often there is no obvious cause, dilated cardiomyopathy can be genetic or the result of a virus, the surgeon said.

Turns out, Christina Fromm suffered cardiac arrest several years ago, and like Abi, she had no previous symptoms and did not know she had a heart condition.

“It was quite a bit for (Abi) to have to deal with,” Christina said. “I guess the first night was really hard because they said I only had a 10 percent chance of surviving.”

At the time, Christina was diagnosed with giant cell myocarditis, but when Abi started having heart issues, it was determined that Christina actually had cardiomyopathy.

Now, mother and daughter can appreciate what each has gone through.

“I think I went through it to be able to help her,” Christina said. “She also helped me a lot.”

For Abi, who has two older brothers, her mom’s journey was another reason to pursue a career in the medical field.

Abi has known for years that she wanted to be a nurse, but after seeing her mom be cared for in the hospital and experiencing her own medical hurdles, it solidified exactly what she wanted to do and where she wanted to do it.

“I hope to work here on the heart floor,” Abi said.

That’s the kind of news Dr. Herrmann likes to hear.

“I think it’s powerful for Abi to take her personal journey and handle that in a way that she can help people going forward in her career,” he said.

It gives hope to those on their own journey when they can see others who have been through the same challenges.

The July 24^th surgery went so well that Abi was discharged from Riley earlier this week to the Ronald McDonald House, where she will stay with her mom and complete rehab at the Center of Life for Thoracic Transplant at IU Health Methodist Hospital before going home.

“She came into surgery highly motivated and ready to make the most of her new heart,” Dr. Herrmann said. “I think that really carried her through her hospital stay. The donor heart was excellent. I don’t think there’s any more we could have asked of her during that period.”

Abi said her new heart beats louder than her old one, and she looks forward to getting back to the things she loves without being tied to a machine. That includes swimming, something she hasn’t been able to do for nearly two years, as well as working and thinking about college once her recovery is complete.

The nursing staff and doctors have made Riley home for Abi and her family, while helping her navigate her diagnosis and transplant.

She has connected with many nurses, including Kacy May, Danielle Sullivan, Sarah Crider and Connie Neuzerling, as well as child life specialist Courtney Lyon and transplant coordinator Maegan Boehm.

Cardiologist Dr. Megan Wilde gets a special shout-out for her support over the past year and a half.

“I love Dr. Wilde,” Abi said. “She’s a huge part of this journey. I wouldn’t have been able to do it without her.”

While Abi hopes to make Riley her work home one day, she is ready to get back to her home in Fort Wayne and be able to spend more time with her family.

Asked what Abi can expect when she gets home, Alan Fromm jokingly replied, “a lot of laundry and dishes.”

Seriously, he said, he is excited for his daughter and looks forward to seeing her achieve her goals and continue her education.

“It’s been a long road, but I’m full of joy now,” he said. “I’m just praising the Lord that she finally got to this point.”

The Fromm family, who lean on their faith to guide them through the good days and the bad, want to send a special thank-you to the donor family for their gift and their sacrifice.

“That's been the toughest part,” Alan said. “I have a heavy heart for that family. I hope someday they’ll want to meet us, meet Abi.”

Without the donor family, none of this would be possible, Christina said.

“The lives they saved are absolutely amazing,” Abi agreed. “I’m just very, very, very thankful.”

Riley Children’s Health is ranked among the best in the country for cardiology and heart surgery by U.S. News & World Report.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Two-year-old Gordy Leavell was just trying to get out of his camping chair and reach out to his dad nearby when he tripped and stumbled.

He landed on the still-hot grate of an extinguished campfire, where his parents, Jack and Claudia, had cooked him a hotdog an hour earlier. Luckily, they were right there to lift him off immediately. But the damage was done.

The family camping trip to a park in Columbus, Indiana, ended with an ambulance ride to Indianapolis on July 22 and a weeklong stay at Riley Hospital for Children, where Gordy underwent skin graft surgery for serious burns on his arms and hand.

“His left arm took the brunt,” Claudia Leavell said. “The fire had been out for a while, but it was still hot.”

When Gordy’s mom saw the burns, she called 911 while the toddler’s dad retrieved a first-aid kit from the couple’s camper and soothed his son’s arm with a gel burn pad.

A volunteer firefighter who happened to be at the pool nearby heard the call on his radio and rushed to see if he could help. He couldn’t assist with a burn, but he stayed with the Elwood couple until an ambulance arrived.

Meanwhile, nearby campers helped Jack load up his camper, while Claudia climbed into the ambulance to ride with her son, who by that time was asleep, exhausted by his tears.

Jack took the couple’s 3-month-old son, Gunnar, with him as he followed the ambulance to Riley.

Once there, the Riley burn team met them in the emergency department, ready to clean the burns, wrap his arms and send him up to the burn unit.

A few days later, Gordy underwent surgery, during which Dr. Brett Hartman used a donor site on the boy’s thigh to graft skin onto his left arm and applied spray skin to his left hand and right arm.

Burns are among the most painful injuries a person can suffer, but Gordy was a trooper through it all, his mom said.

“Gordy wanted to help change his own dressings,” she said. “He would take them off, kiss them, let the team redress them, then help wrap his arms. He was so intrigued by the boo-boos.”

The burn team was amazing every day, she added.

“They were so incredible to us. Just seeing all the other kids up there, we appreciated them so much.”

Burn nurse Angela Seitz remembers her young patient well.

“That little boy is such a happy kid. He makes taking care of him fun,” she said. “And his parents are amazing.”

She has a special message for Gordy, who returns to Riley every two weeks for dressing changes.

“Thanks for the high fives, buddy.”

Others involved with his care included nurse Christopher Swift, physician assistant Elissa Guevara, nurse practitioner Abigail Chapman and child life specialist Taylor Cox.

Claudia said Gordy’s arms are healing well, and he’s even back to playing his version of baseball, a game the 2-year-old naturally calls “Hey Batter.”

Even though he seems unfazed by the trauma, his parents are kicking themselves for not having a protective fence around the campfire site and encourage all parents to take the extra precaution.

“He knows fire is bad, and he doesn’t go near it,” she said. “But this is a lesson we had to learn. I pray that I can save at least one family from going through what we have.”

She learned something else through this accident.

“Gordy is the strongest kid I’ve ever met in my life. All the doctors and nurses are just amazed by his strength. I’m so grateful that I get to hold my baby tonight. He is irreplaceable.”

Riley Children’s Health President Gil Peri emphasized the power of “team” in his opening remarks highlighting all of the key people that patients and families encounter throughout their Riley journey, including but not limited to, valet/guest relations, registration staff, child life specialists, doctors, nurses, and music/dance therapists. He was followed by members of his team, Dr. Wade Clapp (Chair, Department of Pediatrics) and Dr. Mara Nitu (Chief Medical Officer) who shared similar remarks on the power of the Riley team and how far this organization has come.

Dr. Nitu emphasized that this is a “Great celebration of consistency and high quality care,” and thanked Riley families for trusting Riley with their children and being an essential part of the team.

When Sarah and Tyler Lee look at their baby girl, they are reminded of just how far she’s come and how blessed they are.

The Pittsboro couple, already parents of 8-year-old twins and a toddler, thought everything was routine with this pregnancy until a 30-week ultrasound revealed enlarged ventricles in baby Josie’s brain and the absence of a corpus callosum. The latter is a large bundle of nerve fibers that connect the two brain hemispheres.

They prepared themselves for the possibility of physical and mental limitations in their baby, but before they could learn too much, Sarah went into labor while teaching her Brownsburg West Middle School math students.

Josie Lee entered the world fast – within 2½ hours – and early – at 34 weeks. Doctors at the northside Indianapolis hospital where she was born March 3 of this year soon reached out to the molecular genetics team at Riley Children’s Health.

They were concerned that the baby’s lactate levels were fluctuating wildly and consulted Dr. Brett Graham, who specializes in medical genetics for Riley’s Medical & Molecular Genetics team.

That started a chain of events that Sarah Lee believes saved Josie’s life.

Testing revealed what Dr. Graham had suspected, even though he hadn’t yet laid eyes on the child.

Josie has a rare metabolic condition called pyruvate dehydrogenase complex deficiency, which disrupts how the body processes glucose. Instead of turning glucose into energy to power the body, it turns it into lactic acid, which can build up and attack the brain and other organs.

Doctors also discovered Josie had suffered subclinical seizures due to the buildup of lactic acid and brain damage in utero from her condition.

“We were thinking this was not a life-sustaining condition,” Sarah said, adding that she and her husband were even discussing final arrangements for their child.

But they also knew that they wanted Josie to have a fighting chance.

After all, Sarah reasoned, perhaps Josie came early because she knew she needed help.

“We have to go where the experts are,” Sarah said she and her husband decided. “There’s only one (board-certified) metabolic team in the state, and they’re at Riley.”

Even before tests confirmed what Dr. Graham suspected, he advised the team at the other hospital to start her on a ketogenic diet to manage her levels of lactic acid and control her seizures.

The difference was almost immediate.

“As soon as she was put on that diet, her lactates fell to a normal range for the first time,” Sarah said.

Her daughter suffered some brain damage in utero, “but if we had not gotten in touch with Dr. Graham and gotten her on the ketogenic diet, it would have continued.”

Dr. Graham remembers consulting with the Lees about the results of the genetic testing, first on the phone before they came to Riley.

“It’s important to give hope where hope is due but also be clear about the range of possibilities,” he said, noting that the condition Josie had can be terminal in the first weeks of life.

“But Josie responded very well to the ketogenic diet, which we’re all grateful for,” the physician said.

When the Lees arrived at Riley, they were met by medical geneticist Dr. Molly McPheron.

Sarah recalls hearing words like “manageable condition” and “ketogenic recipes.” Even talk of “favorite snacks” like pork rinds for kiddos.

“I just remember thinking, pork rinds? You need teeth to eat those. Are you suggesting we may have enough time with our daughter that she will have teeth and eating food?”

That was when everything changed, Sarah said, through tears.

“There was hope in the air. There was experience with this condition, and there was a plan.”

The Riley NICU was the couple’s home from late March to late May, during which time the Lees recall so many nurses and doctors advocating for Josie and for the family.

“Nurse practitioner Kathy Green … has been the glue that has held this team together from Josie’s very first day at Riley,” Sarah said. “She has been fighting for Josie every day.”

In addition, she said, “the genetics and metabolism people changed everything. They had a plan, they had experience. … They gave us our daughter back.”

During that time, neurology ketogenic dietitian Taylor Parrish and the metabolic team came up with a recipe to keep Josie’s lactates in the normal range and prevent further seizures.

The specialized ketogenic formula uses small amounts of Sarah’s breast milk mixed with the right amounts of fat, protein and supplements to nourish Josie without taxing her body’s ability to convert carbs.

“Because she can’t break down carbohydrates in breast milk, she kept getting higher lactic acid buildup,” Parrish explained. “That’s what was damaging her organs and her brain. We needed to come up with another way for her to get nutrition so her cells can still get energy.”

The ketogenic diet is high in fat, adequate in protein and low in carbohydrates, so now Josie’s body is using ketones for fuel, Parrish said.

“Her brain cells are able to use these ketones as energy instead of glucose. Because we were able to get her on the ketogenic diet when we did, we were able to prevent further damage.”

Josie is closely monitored to ensure she is receiving the appropriate amount of nutrients, but she is doing well, Parrish said.

“She is growing well, and she has been stable, which is great. Josie’s parents are huge advocates for her.”

While the ketogenic diet has been successful in treating Josie’s condition, it’s just the beginning, Dr. Graham said.

“The development of therapeutics for rare diseases is exploding. This is a dietary treatment to bypass the defect, but there are ongoing clinical trials for more direct treatments,” he said. “Even with rare diseases, the future over the next several years is a rapidly changing landscape.”

Genetic testing early in critically ill neonates is also making a difference in their care, Dr. Graham said. Dr. Kristen Suhrie, director of perinatal genetics and an attending neonatologist at Riley, is spearheading the effort.

Previously, genetic testing would take several weeks or months to come back, but by partnering with Riley’s neonatology team to more quickly identify babies who meet the criteria for testing, they are able to submit and get results back from a diagnostic laboratory in one to two weeks.

That’s valuable time during which treatment can begin.

“We’re getting timely results in patients we suspect could have an underlying genetic disorder,” Dr. Graham said. “And in a level 4 NICU, that’s a pretty significant fraction of the patients.”

Josie, who has a G-tube delivering her ketogenic formula, continues to grow and change, her mom said.

“She is gaining weight and growing like a weed. We are incredibly blessed to be where we are right now,” Sarah said, adding that the family is “taking one day at a time with our sweet girl, knowing she has a purpose and God has a plan for her life.”

“In our eyes, this is a place of miracles,” she said about Riley. “It has completely changed the trajectory of our daughter’s life. We don’t know what tomorrow holds, for any of us really, but we know that we have gained more time with our daughter than we had originally thought.”

And for that, they are eternally grateful.

Will DesJean is a champion in more ways than one. Recently, he won the Boys 10 & under 200 Freestyle at the IUPUI Natatorium as part of the Indiana age group long course championships.

When asked about his victory, Will responded with a simple three words: “It was good.”

For the DesJean family, good swim meets, good days and good health are gifts they don’t take for granted after what their family has been through.

In October 2020, Will was struggling to bear weight on his left leg, and a swim practice ended with a fracture of his femur. His mom, Stacy, a nurse, knew something wasn’t right and took then 8-year-old Will to Riley Hospital for Children, where tests revealed osteosarcoma – bone cancer.

Since that initial diagnosis, Will has gone through several rounds of chemotherapy and multiple surgeries, the most recent being the removal of a tumor in his lungs in September 2021.

After his most recent scans on July 27, with the help of Dr. Christopher Collier, his orthopedic oncologist, and Dr. Melissa Bear, his oncologist, his family is happy to say that Will, now 10, has no evidence of cancer.

But the effects still linger, Stacy and Chris DesJean say. His body is fragile, and a reinjury of his leg could cause complications and put Will at high risk for amputation. Because of this, modifications have to be made for him in activities that involve running and jumping.

Swimming, one thing he is allowed to do, has provided a great outlet.

“He has really excelled at swimming,” Stacy said. “He’s met some wonderful friends along the way … It’s been wonderful to watch him grow in the water and as a person.”

Will was advised by his orthopedic oncologist to not dive off the blocks like other competitors, so he dives off the side of the pool. Diving off the blocks is key to a race, because it propels you a greater distance, but Will does not let that stop him. He adapts, overcomes and walks away a champion.

The DesJean family comes to Riley about every four months for Will’s scans and oncology appointments. While it might get a little easier every time, the anxiety and fear never truly go away, which is why they’ve relied heavily on their faith during this time.

Stacy said they have had wonderful support from their church and youth group, who come over to pray before surgeries and always send encouraging texts before scans. Recently, Will made a huge decision to get baptized.

The church and community have also lifted up Will’s sisters, Ella and Claire, who worry about their brother.

During the pandemic, the number of visitors was limited, so Ella and Claire were not able to see their brother in the hospital. They would only see him when he came home for short periods of time.

“It was very hard for them,” Stacy said. “They would see him kind of at his lowest from all the side effects of chemo.”

Now, they are grateful to spend time with their brother, and this most recent swim meet allowed them to see him at his peak rather than at his low.

Stacy says that Will’s cancer will always be a part of their family's story and has taught them many lessons.

“The fight against osteosarcoma may never be over, but William will always win.”

“I mean he’s had like a thousand careers. When he was younger, he was a window washer like on a high-rise. He’s worked in the oil fields. He was a clown that would come to your kids' birthday parties,” Maria LaRosa, shift coordinator, said of Craig Sylvester.

When Craig Sylvester applied for a nursing job at the Riley Outpatient Center, he knew he was in the right place when he saw a statement engraved just beneath the directory board of the ROC.

“Let all who walk this way know that Indiana cherishes her families, that she loves her children. In this very special haven, no child shall cry unheard… none shall walk alone… and no mother or father shall be friendless.” – Dr. Morris Green, first physician-in-chief of Riley Hospital.

“If I can walk in here every day and practice like that, then this place is for me,” Sylvester said. “This is what I want to do for people.”

Sylvester has been a nurse at Riley for 13 years in the outpatient surgery center, and he looks at that quote every day when he walks in. Before that, he worked at IU Health University Hospital for many years. At Riley, he has been a charge nurse and led various committees, but he is most well-known for his passion for people.

His co-workers say Sylvester truly goes above and beyond, and that he receives more positive comments from his patients than anybody. It is safe to say that radiating positivity is his mission. Just ask Mary Ash.

Ash has worked at Riley Hospital for 45 years, taking on various roles within the hospital, starting out on the infant unit when Riley was age-based and transitioning to roles such as clinical educator, night-shift supervisor and patient-care coordinator. Now, she dedicates her time solely to caring for patients.

Sylvester was one of the first people Ash encountered when she transferred from another area in the hospital to the outpatient surgery center.

“He was friendly from the get-go,” Ash said.

Sylvester and Ash have formed a good working partnership and friendship over the years, which inspired Sylvester to create an award last year called the “Mary Ash Award” to deepen the sense of camaraderie within the unit.

Ash was training for her first marathon when she cracked her tibia and tore her meniscus. Nevertheless, she came to work the next day walking on crutches down the sidewalk when Sylvester spotted her on his drive into work.

Sylvester said Ash came into work and completed every task that normally would have been expected of her in the PACU, even on crutches.

That inspired Sylvester to challenge his colleagues: “If Mary Ash can make it to work on crutches, there’s no reason why you can’t or I can’t make it to work today.”

Eventually, Sylvester created the Mary Ash Award when one of the unit’s nurses fell and hurt herself and came into work the next day just like Mary Ash did.

“I signed my name as the commissioner,” he said. “I had found a doll crutch in the parking garage when I was coming out from lunch, and so we have the award up at the nurse’s station, with the crutch there. If you do something good, you get the crutch for the day.”

Ash, a little embarrassed to have an award named for her, said it has helped camaraderie on the unit.

Sylvester, currently on medical leave, nominated Ash for the Nursing Excellence Award, and at the ceremony in May that celebrated the winner and nominees, Ash received a note from Sylvester with his nomination comments.

Although she didn’t win, his kind words and friendship are greater gifts to her, she said.

“I don’t think it was the award,” she told Sylvester. “It was the fact that you did this with the stuff that you had going on.”

Ash’s nomination is posted in the hallway so everyone can see it.

Others have also felt Sylvester’s kindness.

“I’ve worked with Craig for 13 years,” Maria LaRosa said. “He is wonderful with patients and families. He is so caring and so giving. And the families really flock to him.”

That caring philosophy extends to the staff as well.

Connecting with co-workers is something Sylvester has always worked at in his career. He likes to point out when other nurses are doing a great job and tell them when he can see that the family really appreciated the care their child received. He especially praises the student nurses, because they are the future of the nursing profession, and he said he wants them to enter with good attitudes.

“It’s easy enough to point out the bad things people do. And it’s easy enough to hold a grudge against someone you work with. That’s not the way I like to work,” he said. “I want to go to work every day and drop everything at the door. We are going to get down, things will happen that make us sad, but that’s why I think it is important to keep everyone’s spirits up.”

While he may not be physically in the building, Sylvester is still a prominent part of his team and has been working on several new projects that celebrate current and past doctors/nurses for their contributions to the spirit of Riley Hospital.

He has made it his mission that no one walks alone in their journey at Riley, whether they are a patient or provider.

And he is on the receiving end of the compassion that he so willingly shares with others. His co-workers from the outpatient surgery center unit remain in close contact with him throughout his personal healing journey, and they look forward to his return, LaRosa said.

“The place isn’t the same without him!”

No matter the day or time, you can count on the Riley team to care for your child close to home. There are also Riley nurses, respiratory therapists and child life specialists ready to support your child through medical challenges.

You can even view wait times for the Riley Emergency Department at North online by clicking here.

A path to independence: Thirteen-year-old Zailey Andrade was born with Arthrogryposis Multiplex Congenita, a condition that impacts all of her joints. So, she requires a wheelchair to get around.

Zailey and her parents turned to the Riley Children’s Health team to help her get the perfect power wheelchair. A power wheelchair allows Zailey to navigate the chair on her own instead of needing to be pushed by someone else.

Occupational therapist Tiffany Stead was part of the team that evaluated Zailey’s needs and worked with Zailey to ensure the power wheelchair was just right.

“Everything is custom,” Stead said. “She drives with her mouth, and so we had to find the appropriate way to access that and then make sure that we trialed it so that she could make sure she was successful at it.”

"When we started out, we thought we're gonna lose one or both of them," Daniel said. "And, we ended up having both. We're definitely thankful for the Riley team because, if it wasn't for them, we wouldn't be where we're at now."

The family will represent Riley at the Indianapolis Indians game this weekend by throwing out the first pitch!

Selena VillaGomez-Diaz was just about 2 months old when her dad, Angel Diaz, noticed an unusual curve in her tiny back.

“She was leaning to one side all the time, even when she lay down or when we picked her up,” he said. “She was always slouched over to one side.”

As the curve in her spine continued to worsen, Angel and his wife, Jessica, sought answers from the Riley Children’s Health orthopedic team, specifically orthopedic surgeon Dr. Tyler Christman, who specializes in scoliosis treatment.

Signs of scoliosis include leaning to one side, uneven shoulders, a shoulder or hip sticking out, and ribs protruding on one side. While scoliosis occurs most often during the growth spurt just before puberty, infantile scoliosis can develop in the first six months of life.

Now 5 years old, Selena has undergone multiple interventions in an attempt to straighten her spine, most recently surgical implanting of growing rods by Dr. Christman.

“Her surgery is unique in that she is exceptionally small, and her curve is extreme,” the surgeon said.

In fact, Selena is the smallest patient to have this surgery at Riley. She’s not the youngest, Dr. Christman said, noting he had performed the same operation on a 2-year-old. But at just under 28 pounds, she is the tiniest.

Born with a chromosomal abnormality and kidney problems, Selena has always been small, but placement of a feeding tube enabled her to gain enough weight to have the surgery, her parents said.

Angel Diaz holds up X-rays of his daughter taken before the surgery, which show a significant curve.

“It’s like a question mark going on there in her back,” he said, as his agitated daughter was comforted by her big brother and best friend, Alexander, at Riley.

“He wanted a brother,” the children’s mother said, “but he is very protective of her.”

There was no question that young Selena needed the surgery, despite her age and size, Dr. Christman said.

She was initially fitted with body casts as a baby, then moved to a brace, but her scoliosis continued to progress, he said.

“She started to develop more of a kyphotic deformity,” he explained.

Kyphoscoliosis is a more aggressive form of scoliosis, which can lead to organs being affected.

“That’s one of the main reasons I felt she needed a surgery of this magnitude at such a young age,” Dr. Christman said, “because we know that when scoliosis progresses, particularly above 80 to 100 degrees, there does start to be compromising of cardiopulmonary function.”

Selena’s curve was already at 100 degrees or more (among the most serious he’s seen), so allowing it to continue could have a significant impact on her quality of life and her heart and lung function, he said.

Casting can be a particularly effective treatment for infantile scoliosis, but eventually patients can age out of that option. The spine becomes more rigid and less amenable to casting as children get older. Those children would graduate to a brace, and some, like Selena, need to have growing rods.

Selena was discharged from Riley last week, a few days after her surgery, but she will return this week for a wound check, then come back in three months, when Dr. Christman will begin lengthening the MAGEC (Magnetic Expansion Control) rod in her spine.

“This type of construct is really a bridging technique to allow the spine to be controlled and supported and to prevent additional progression while the patient continues to grow,” Dr. Christman explained.

“All children who have these growing rod constructs eventually will require a more definitive fusion where we remove the magnetic rod and place additional screws and a more adolescent-type construct,” he added.

The growing rods allow kids to age, mature and get taller before a more permanent surgery is done.

“If I were to fuse them at 5 years old, and that portion of the spine no longer grew, there would not be space for an adult heart and lungs.”

Selena still has a long way to go, Dr. Christman said, and may require additional procedures, including a new set of growing rods.

The rods he placed, which will allow for 3 centimeters (approximately 1.18 inches) of growth, are the smallest that the manufacturer makes. The surgeon expects to adjust Selena’s growing rods by about 3 millimeters (a fraction of an inch) every four to six months.

Dr. Christman, whose primary focus is on scoliosis patients, said Riley has a “fantastic, multidisciplinary team” to care for patients with spine deformities.

“We have tremendous resources and expertise at Riley that allow me to do this type of surgery,” he said. “Without the knowledge, expertise and support of the spine team, including the anesthesia team, our pain team, the nursing staff, the operating room staff, as well as the physical therapists, this type of surgery, this complexity of surgery would not be possible with the same success rates that we have.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

How are the pediatric orthopedic surgeons at Riley Children’s uniquely qualified to care for children with spine disorders?

Dr. Puryear: We are fortunate to have three fellowship-trained pediatric orthopedic spine surgeons experienced in consultation, diagnosis and treatment of the full range of conditions, including scoliosis and spinal deformity. As pediatric orthopedic surgeons treating infants and children of all ages, we are skilled at managing the needs of the growing child. Our surgical techniques include use of the growing spine constructs such as the MAGEC rod to reduce the need for spinal fusion and preserve spine motion—both of which contribute to better patient outcomes.

My colleagues, Dan Drake, MD, and Tyler Christman, DO, MS, are pediatric orthopedic spine surgeons at Riley Children’s and also faculty members at IU School of Medicine. In addition to engaging in research that translates to clinical care, we are actively involved in well-regarded surgical performance and study groups such as the Pediatric Spine Study Group and Setting Scoliosis Straight.

What is the age range of your patients and what conditions does the team treat?

Dr. Puryear: We treat infants, children, adolescents and young adults up to about age 21. We care for patients with a wide range of spine conditions, including all types of scoliosis, kyphosis and spondylolysis/spondylolisthesis. Our team also sees children with cervical spine disease, whether it be instability or myelopathy. One aspect of our program that’s unique is our monthly multidisciplinary spine conference where we review all of our operative cases and some nonoperative cases.

What types of advanced treatment options and technologies are available at Riley Children’s to treat spine conditions?

Dr. Puryear: Our orthopedic spine surgeons perform all available surgical options. For deformity surgery, spinal fusion is the primary surgical treatment. For scoliosis, I mentioned the MAGEC rod, which is an innovative surgical technique that allows for greater spine motion. It’s also important to note that Riley Children’s is one of the few facilities regionally to provide casting for infantile or early-onset scoliosis.

In terms of advanced technologies, we use O-arm, which is similar to a CT scan, for image guidance in placing implants intraoperatively in a more precise way.

We also have the benefit of EOS imaging, which offers a complete picture from the head all the way down to the lower leg, allowing for imaging of anterior-posterior and lateral at the same time. The benefit of EOS is that we’re able to obtain these images with up to four times less radiation than traditional methods. We were the first in the state to use EOS and are among the few nationwide with these machines.

We also offer all casting options, including nonsurgical casting and bracing. In cooperation with our team of skilled therapists, we provide various kinds of physical therapy and even yoga and forms of manipulative therapy for patients as part of a comprehensive treatment plan.

How do Riley orthopedic surgeons collaborate with other teams of pediatric specialists?

Dr. Puryear: In addition to our pediatric spine surgeons, our multidisciplinary team includes experts in anesthesia, pain management, radiology, nursing, plastic surgery, nutrition, and physical medicine and rehabilitation. Not every child with scoliosis or a spine disorder needs multidisciplinary treatment. But for patients with co-occurring conditions, such as spina bifida, seizure disorders or pulmonary embolism, we collaborate with our colleagues in other specialties at Riley Children's.

We discuss all surgical cases at our monthly spine conference to determine the type of expert oversight and treatment that’s required for patients with special needs. Working together, our goal is to ensure every patient is adequately prepared for surgery and achieves the best possible outcome.

If you are a provider, you can easily refer a patient for comprehensive pediatric orthopedic spine care. Learn more about our specialists and how to refer a patient.

Tracy Martinez wishes she could have told her then-36-year-old self it was all going to be OK.

Better than OK, actually.

Martinez, already the mother of a teenager, found out she was pregnant late in 2020. A big surprise, she said.

“I wasn’t trying to get pregnant, but obviously he came into our lives for a reason.”

“He” is 2-year-old Bastien Sapp, a cheerful bundle of energy who has become quite familiar with Riley Children’s Health.

Martinez had planned to travel the world as soon as her teenager graduated from high school, she said. Her dream was to go to Egypt.

Her pregnancy changed all that.

When an ultrasound later revealed serious issues with her unborn baby, the single mom was overwhelmed until the team at Riley eased her concerns.

Tetralogy of Fallot (a combination of heart defects) and tibial hemimelia (a serious bone deformity) were diagnosed prenatally.

“I was shocked,” Martinez said. “I had never heard of either of those conditions. But we adapt and overcome, so we made it happen. He’s been a blessing,” she said as she kissed her little boy.

Bastien was born in May of 2021 at IU Health Methodist Hospital and immediately transferred to Riley Hospital for Children.

At 6 months old, he had open-heart surgery to repair his heart. He continues to see Riley cardiologist Dr. Poonam Puranik.

Tetralogy of Fallot is rare enough, but tibial hemimelia (also known as tibial deficiency) is estimated to occur in just 1 in 1 million live births, according to Dr. Christine Caltoum, division chief of pediatric orthopedic surgery at Riley.

“It’s a very rare disorder,” the surgeon said, adding that it can be associated with other abnormalities or organ issues, but often it is a spontaneous occurrence.

“There can be some genetic component as well,” Dr. Caltoum said. “But in his case, nobody else in the family has it.”

A child with the condition is born with a tibia (shinbone) that is shorter than normal or missing altogether. In less severe cases, multiple reconstruction surgeries over years can correct the problem, but in Bastien’s case, removing a portion of the limb and being fitted with a prosthesis was a better option, Dr. Caltoum said.

It would have been challenging to do reconstruction on Bastien because he had very little tibia to work with, she explained.

Just after Bastien’s first birthday, he underwent surgery to have his right leg amputated at the knee. Martinez created a mold of his little foot to show to her son when he gets older.

A few months later, he was fitted with a prosthesis, a tiny little limb that his mom slips on easily in the lobby of Simon Family Tower at Riley.

And away he goes!

Bastien races around the expansive lobby, stopping only to say hi to another little boy sitting in a Riley wagon. His gait is awkward, only because he can’t bend at the knee yet, but as he grows, his prosthesis will be adapted for him.

“Once he gets taller, he’ll be able to get a knee joint put in and a flexible ankle,” Martinez said.

And he will be less likely to walk with a limp when he gets older.

“When you do an amputation at a young age, they get fitted early on with a prosthesis, not long after they’re learning how to walk, so they really hit their motor milestones almost as normal,” said Dr. Caltoum, who has been seeing Bastien since he was about 2 weeks old.

“He will be able to have a normal childhood without many restrictions,” she added. “He’s really delightful. Just to see him on his last visit when he’s walking around the exam room, it’s wonderful.”

Martinez said her goal at the beginning was to make sure her son received the best care possible.

“I feel like Riley is it. The Riley team is really great. Dr. Caltoum is very hands-on, very nurturing when it comes to him,” Martinez said. “She’s really great with him. He has pretty much grown up here.”

He is a happy little boy who has filled a hole that his mom and dad, Oakley Sapp, didn’t even know was there.

“He has been a great addition to our family,” Martinez said. “He’s really made me whole. And his dad loves him so much. With everything that’s happened, I’ve learned to take what’s been given to me and see the blessing at the end.”

No, this is not the life she envisioned just a few years ago, she said.

“It’s better. Who needs a camel in Egypt when you’ve got this perfect little guy?”

The Riley Children’s Health pediatric orthopedics team is ranked among the best in the nation by U.S. News & World Report.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Their oldest daughter, Brooklyn, was born with a cleft lip and palata in 2017. She was transported to Riley Hospital for Children, where she eventually underwent multiple surgeries. Now, the family's youngest child is on the same path. Jackson was also born with a cleft lip and palate. He's preparing for his second surgery in August.

Kristne Lane, their mom, says they feel more informed this time around. They've also built rapport with the craniofacial and cleft team at Riley.

Dr. Emma Cordes is Jackson's surgeon.

"Cleft lip and palate is the most common congenital facial anomaly," Dr. Cordes said. "So, about one in 600 kids in the United States have a cleft lip or palate."

Riley has a multi-disciplinary team available to treat patients like Brooklyn and Jackson.

For the second time in as many years, Brian and Mallory Aylor watched as their little boy was wheeled back into surgery to receive a hero heart.

This past weekend, the young parents from southern Indiana got the news they had been praying for ever since last summer, when their son, Junior, began showing signs of rejection after his first transplant.

“We got the call. Praise the Lord!” That was Mallory Aylor’s message to her friends, family and Facebook followers Sunday just after sending 3-year-old Junior back for surgery with Dr. Mark Turrentine.

The Riley Children’s Health transplant surgeon has been by Junior’s side pretty much since birth.

It was during a prenatal appointment at 24 weeks when Mallory found out her baby had serious heart defects, including hypoplastic right heart syndrome, tricuspid atresia, transposition of the great arteries, atrial septal defect and ventricular septal defect, more commonly known as holes in the heart.

“He had it all,” she said.

Thanks to nutritional support provided by Dr. Charles Vanderpool and team, cardiology care by Dr. John Parent and dozens of other care team members, Junior was strong enough to undergo his first transplant surgery a few weeks before his first birthday.

The family enjoyed a year at home before Junior was back in the hospital with complications.

Since then, he has been at Riley, waiting for a new donor heart while battling a host of other health issues. He recently celebrated his 3^rd birthday in the hospital.

On Friday night, more than a year since Junior had been back in the hospital, the family got word that a new heart was a good match.

“Thank you for all the love and prayers,” Mallory said. “The hard part is just beginning.”

But, she added, “he handled surgery like a champ.”

Junior’s parents got to listen to his new heartbeat after he returned from surgery Sunday.

“His body so far is liking his new heart,” Mallory said. “Slow and steady wins the race, and Junior is doing great.”

On Monday, he had his first echocardiogram, she said.

“It was beautiful to see a beating heart.”

According to cardiac transplant coordinator Debbie Murphy, 11 patients have been retransplanted at Riley since the pediatric heart transplant program began.

But Junior is the youngest, she said.

The previous record for a second heart transplant at Riley was held by a child who was 5 at the time of her second transplant. She continues to do well nearly four years later, Murphy said.

Riley Children’s Health is consistently ranked among the top cardiology and heart surgery programs in the nation by U.S. News & World Report.

To learn more about organ donation, click here.

Previous stories:

Junior gets a new heart weeks before his first birthday - Brian and Mallory Aylor’s son was born with multiple heart defects. He has been hospitalized at Riley for 7 months.

Junior waits for a second hero heart - The 2-year-old transplant patient is back at Riley as his parents pray for another lifesaving gift.

"It the greatest anguish, shock and pain," Lauren said.

She eventually turned to the Kate Cares Stillbirth Assessment Program, from Riley Children's Health, to learn what may have caused this tragic outcome. The team was able to investigate and informed Lauren that there were no conditions that would cause subsequent pregnancies to have the same outcome.

When Lauren became pregnant with her rainbow baby, she turned to the Riley Maternal Fetal Medicine team. She says their care and compassion helped navigate the anxiety she felt after losing her first baby.

Listen to the full episode here: https://open.spotify.com/episo...

Jeff Taber is talking on the phone while making dinner for his family.

“It’s Taco Tuesday,” he said, before quickly realizing it was Monday.

But tacos taste good any day of the week, and Taber was acting as head chef for his large family.

Cooking in his own kitchen is something the Bloomington-area husband and father of eight missed while inpatient for six months at Riley Hospital for Children, waiting for a new heart.

One year ago this month, Taber received that precious gift, and his family celebrated by making him a “heart-iversary” cake – decorated by his 13-year-old artistic daughter.

The past year has been spent re-establishing a routine, he said, remembering where all the light switches are in his house, and reminding himself how blessed he is.

“I’m trying to write a letter to my donor family. I don’t know what to say or how to say it. I think I’m overcomplicating it,” he said.

The best advice? Speak from the heart.

Just last month, Taber returned to full-time work. A chef by training, his current job is in an entirely different field. He is a certification officer for the Department of Workforce Development, primarily working remotely.

That doesn’t leave much time for building LEGO sets, something Taber was well-known for at Riley, but he has many of those creations displayed at home for the kids to enjoy.

Taber had been a congenital heart disease patient at Riley for years before his transplant, performed by Dr. Mark Turrentine. Post-transplant, the 45-year-old’s care has been transferred to IU Health Methodist Hospital, where he sees cardiologist Dr. Maya Guglin.

He has not suffered any signs of rejection, faithfully taking multiple medications daily to maintain his health.

With eight kids, the family is always on the move, he said, whether that involves traveling for speech and debate competitions, swimming or other activities.

Next month, Jeff and Jenny Taber’s oldest child will head off to college in Berea, Kentucky, a reality that hasn’t quite sunk in yet.

“Check back with me in August,” Taber said.

Meanwhile, as he adjusts to his job, and the younger kids get ready to go back to school, Taber is grateful, even on the hard days, for this second chance.

“We are just living life and moving forward.”

Previous stories:

“Chef Jeff” cooks while he waits for a heart - Creative therapy helps this father of eight find joy as he marks months on the cardiac unit.

Bloomington father of 8 gets his new heart - Two weeks post-transplant, chef Jeff Taber, who endeared himself to younger patients on the Heart Center with his LEGO creations, is leaving Riley to continue cardiac rehab at COLTT.

Just a few months later, Draven is healing well and bringing joy to his mom's life every day.

"We are blessed because we get to fall in love with two smiles," Ashley said, referring to Draven's smiles before and after surgery.

It was a cold January night when Isabela Juricevic’s world changed in an instant. A second is all it took for her dad’s truck to slide on an icy road and crash into a highway divider near South Bend.

Isabela and her dad, Igor, weren’t injured in the crash, but as he was calling the police, another vehicle spun out and came careering into them. He lifted her up over the highway wall in the nick of time, but both he and Isabela suffered injuries to their right feet.

His was broken. Hers was crushed.

“My right foot was completely demolished,” the 12-year-old competitive swimmer said. “Bones were sticking out. Skin was torn away. I took one look at it and didn’t want to look at it anymore.”

As she recounts the accident while sitting in the lobby of Riley Hospital for Children, she remembers the kindness of strangers.

“This nice lady opened the back of her car so I could lie down as the ambulance was coming. I got really cold, even though I had on this big, puffy jacket. She was so nice and gave me her soft, fuzzy, black fur coat to put on,” Isabela said.

“Then the ambulance came, and I got the sweet nectar of pain medication through an IV.”

Isabela talks like that. She is disarmingly sweet, charming, intelligent and curious. But she is also fierce and passionate.

All of these attributes helped in her recovery, her dad believes.

It’s been a long road.

“It’s still a little difficult to talk about,” Igor Juricevic said as he sat near his daughter following a routine physical therapy appointment at Riley.

“There were some dark times. Times when her pain level was at a 10 and there was nothing I could do other than just hold her and let her know we’ll get through it,” he said. “When it first happened, the mountain we had to climb boggled my mind. It almost seemed too far, too impossible.”

But Isabela is six months out from her injury now – time that has been spent in surgery, in rehab, and now – back in the pool in her hometown of South Bend.

And she might just have a competitive edge.

During treatment at Riley to repair bones, tissue and skin on her foot, Isabela got something extra.

Shark skin.

“There is nothing in the rule book that says someone who is part shark can’t compete in the pool,” Isabela’s dad said with a laugh.

Riley plastic surgeon Dr. Emma Cordes said surgeons commonly use a skin substitute that contains shark collagen to provide a healthy wound bed before placing a skin graft.

While it won’t give her a competitive edge in the pool, it’s still pretty cool, Isabela said.

Around her neck she wears a shark necklace, a gift from a friend.

It was months before Isabela could get back in the pool. She endured multiple surgeries on her foot, including the amputation of her big toe and parts of her other toes.

Burn unit nurse Angela Seitz describes Isabela as a “remarkable” patient and a “true warrior.”

“She gave me a lesson in forgiveness, love and how to persevere. She not only used her courage to get through a tragic situation but showed others how to be patient and never give up,” Seitz said.

The nurse spent a lot of time with Isabela doing wound care and dressing changes, and in that time, her young patient remained positive, even when it was difficult, and knew how to advocate for herself, Seitz said.

Isabela’s parents, Igor and Raquel, were instrumental in her recovery, she added.

“They were by her side for everything and always gave her strength,” Seitz said. “They were her voice when she was emotionally drained. Isabela is a gift, and I am privileged to take care of her and her family.”

Isabela returns the compliment.

“It’s not fun having your foot crushed and having to learn to walk again, but they were so nice and kind, and it really helped,” she said. “And I got a lot of fidget toys out of the ordeal.”

Isabela started getting around with crutches in March, then advanced to a special boot in April.

The first time she tried walking without the crutches, she said, “it wasn’t pretty.”

But she did it, and she rewarded herself by going to the refrigerator at home and grabbing a pickle.

“It was a celebratory moment,” she said. “And I like pickles.”

The severe limp she started with has disappeared for the most part, but she continues to work on ankle mobility in therapy.

She returned to the pool April 22 and competed in her first meet May 27. Her times might be a bit slower, but she has the drive to compete.

“I’ve been swimming since I was 5 years old,” she said. “I love it because I like the flow of the water and being able to splash like a mermaid.”

When she had to sit out during her recovery, she missed her friends, and she missed the water.

“At first it feels great to lie in your bed and watch TV all day, but at some point, you get sick of it,” she laughed. “You want to move!”

Dr. Cordes, who performed all of Isabela’s reconstructive procedures, is pleased with her recovery.

“She was very motivated to get back in the pool, and I think that served as a good goal to work toward as she healed. I am very happy she has been able to return to something she loves to do.”

Igor Juricevic said watching his little girl come back from so many challenges has inspired him.

“I couldn’t be prouder just to see where she is now and how she handled everything. Isabela has always been very outgoing, very loving, very optimistic, and one of my biggest worries was that this was going to change her and take that joy,” he said.

“It’s most gratifying to know that she is still the same Isabela she was before this. She’s the hardest-working person I’ve ever known.”

Seitz agrees, saying, “Thank you, Isabela, for showing everyone how to be strong, brave and unstoppable.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

The bump on her head was just annoying at first.

Brylee Boettjer figured it was the result of a collision on the basketball court. It was 2020, she was 15, and she loved the game.

But a visit to her doctor for a physical raised suspicions and led to a consultation with a dermatologist, then an ultrasound, and next an MRI, which showed multiple tumors in her brain, spine and eye.

The diagnosis was neurofibromatosis type 2 (NF2), a rare, genetic condition that causes tumors to grow on nerves, particularly those in the skull and spine.

If there is good news in that diagnosis, it is that the tumors are noncancerous, but they can do damage in the body, leading to deafness and other disabilities.

Brylee’s dad, Shaun Boettjer, remembers trying to sort out the news, unsure how to explain it to his daughter. But she handled it like a champ, he said.

“She’s been pretty strong the whole time,” he said last month in the Riley Children’s Health outpatient center, as he waited for Brylee to get hooked up for the regular infusion she gets to shrink and/or control the tumors.

“It hit hard when they told us about the tumors,” he said. “But once we got down here to Riley, we felt better after meeting her team.”

That team includes pediatric hematologists-oncologists Dr. Steven Rhodes and Dr. Michael Ferguson, neurosurgeon Dr. Karl Balsara and nurse practitioner Jayne VonBergen, among others.

Two years ago, Riley formed an NF multidisciplinary clinic that pulls together multiple subspecialties in one space so patients can see several providers in a single visit, VonBergen said.

“The clinic is built around viewing the patient in a holistic manner,” she said.

That includes addressing not just medical issues, but psychosocial needs of patients and families. That’s why the team also includes psychologists, social workers, neurologists and neuro-oncologists.

For the past several months, Brylee and her dad have been making the 90-minute drive to Riley from their home in Peru, Indiana, every few weeks for infusion treatment with an angiogenesis inhibitor called Avastin, which has shown good results in Brylee.

There is no cure for NF2, but it can be managed with proper treatment.

“Like many patients, Brylee was on a couple of clinical trials, but her tumors grew through those therapies,” VonBergen said. “With the current therapy, which is an infusion, we’re happy to say that her tumors have shown good response and have actually gotten smaller. At this point we’ve gotten to the point where we feel like we have stabilized her disease.”

Brylee underwent brain surgery in 2021 to remove one of the larger tumors that was affecting her balance and hearing. She had to relearn how to walk at the age of 16, and she is deaf in her left ear.

“I knew what to do, but my body just wouldn’t do it,” she said after the operation performed by IU Health neurosurgeon Dr. Mitesh Shah and otolaryngology specialist Dr. Charles Yates.

But she not only learned to walk again, she returned to play basketball and participate in track and field for her high school team a few months later.

Now 18, Brylee learned she couldn’t compete on the court her senior year when she started the new infusion treatment, but she stayed involved, handling the team’s social media and mentoring younger players.

She was elected prom queen in the spring and graduated from high school in June. In the fall, she will commute to Indiana University Kokomo to pursue a degree in elementary education.

“She is proving that there really isn’t anything she can’t do,” VonBergen said.

The teen keeps her attitude in check, despite the ups and downs of the past nearly three years.

“As much as it’s been a rough journey,” she said, “it could have been way worse. I have a huge support system. The whole town of Peru is on my side.”

Her humor and positive outlook endear her to the Riley outpatient hematology/oncology team, including nurse Ben Hawkins, who calls Brylee “the coolest kid.”

“She makes us all happier and gives us a hard time, which we appreciate,” he said.

While Brylee will continue to live with NF2, her team is hopeful that continued treatment will eventually get her tumors to a dormant state. And they are looking ahead to the time when Brylee and others like her transition to the adult healthcare world.

“We recognize that our children will age out of Riley at some point but will still have NF,” VonBergen said. “We have partnered with our adult colleagues within IU Health so we can smoothly transition them. We are so excited to have this clinic and for the research that’s being done.”

As Brylee began another infusion, she shared another dose of positivity, mostly for young people out there who are facing hard times.

“I’m doing this story to help other kids. I want them to be able to see that even if it might not be OK now, it will be OK.”

Things might be tough for a while, she said, “But you have to climb mountains to get the view.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

LeAnn Naue likes to talk. A lot.

Whether it’s to her baby doll in the stroller, a guy with a camera or a nurse with medicine, she has things to say.

It’s a big part of the 2½-year-old’s charm.

But the best thing she got to say Monday was “bye.”

LeAnn, a cancer patient at Riley Hospital for Children for the past several months, rolled out of the hospital in a Riley wagon this week after finishing her last chemo treatment.

The fifth floor won’t be the same without the toddler who wriggled her way into the hearts of everyone she met, including her nurses, her oncologist, Dr. Alex Lion, and her surgeon, Dr. Rabia Qaiser.

Because once you lock eyes with LeAnn and fall into conversation about babies, pandas, unicorns or bubbles, you don’t forget her.

She must have had some bad days in the hospital. Indeed, “chemo rage” is how mom Jenn Naue describes those fretful hours. But to see LeAnn march around the unit in her light-up boots, wearing her pretend ID badge and talking to everyone who walks by, it’s hard to imagine anything but joy coming from this child.

Joy can be hard to come by when you’re confined to a hospital room, hours from home, but Jeffery and Jenn Naue have taken their cues from their daughter, who was diagnosed six months ago with a rare cancer.

It started with headaches, followed by a bout with COVID last summer, her mom said. Her pediatrician noticed that her head seemed to be growing quickly, according to measurements, but they didn’t suspect a tumor at that point because she exhibited no developmental delays or regression.

Around Thanksgiving, everything seemed to happen at once. The headaches were back, LeAnn refused to eat or play, and almost overnight, she lost the ability to walk.

The Winona Lake couple came down to Riley on Dec. 6 for a CT scan, followed by an MRI the next day. That’s when they met with Riley neurosurgeon Dr. Rabia Qaiser, who told them the grim news that there was a “massive” tumor in their baby girl’s brain.

LeAnn underwent immediate surgery, but it was risky. Dr. Qaiser removed about half of the tumor, which was sent off for testing, but it grew back aggressively in just over a week, so they made the difficult decision to operate again to remove as much of the mass as possible.

That was five days before Christmas.

“There was the potential that she wouldn’t be able to move the right side of her body or be able to see after surgery,” Jenn said.

But her daughter is “a little fighter,” she said. No sooner had LeAnn come out of sedation after surgery and she was already trying to take out the breathing tube – with her right hand.

It would be January before the couple got the news that their daughter had an incredibly rare type of cancer – erythroblastic sarcoma, a variant of myeloid sarcoma.

LeAnn spent 64 days at Riley that first trip and has returned for six intense rounds of chemo, going home for a few days in between each round. She finished her last treatment three weeks ago, and after a couple of setbacks, the family headed home Monday, grateful to put the last seven months behind them.

“She has done remarkably well. It’s a huge blessing,” Jenn said, marveling at her daughter’s energy when they were still inpatient.

“Even on days when her blood counts are low, she still wants to go to the playroom,” she said. “She is very social. She loves the nurses. She blows kisses to Dr. Qaiser when she comes to see her. Dr. Qaiser saved her life.”

The ordeal has given the Naue family a greater appreciation for the medical world in general and for nurses in particular.

“We’ve been fortunate to have a lot of nurses who truly care,” Jenn said. “We’ve also learned how many people in our lives love us. You don’t realize until something terrible happens how loved you are and how grateful you are for that.”

Their once curly-haired kiddo is bald now, a scar running across her skull from surgery, but she doesn’t seem to notice. The day after her last chemo finished, she busied herself blowing bubbles up and down the hallway outside her room. Then she orchestrated a miniature band performance with her parents while she played harmonica, taking breaks to sing a tune she made up, “Happy celebrate, happy celebrate.”

“Come on, mama. I’m running, I’m going so fast,” LeAnn shouted to her mom as they chased bubbles down the hall.

“If you ever need cheering up, come on over and say hi,” Jenn said. “The nurses call it LeAnn therapy. Everybody should get a dose of it.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org, and Maureen Gilmer

A softball hit Gracie in the head and left with her a skull fracture. A CT scan also revealed she had a brain bleed. The doctors at the Illinois hospital she was taken to recommended Gracie be transported to Riley Hospital for Children right away.

Amanda Heany, Gracie's mom, says she felt a sense of relief when they arrived in the Riley emergency department. Both the trauma and neurology teams examined Gracie. A child life specialist brought Gracie special toys to make the experience less scary.

After close monitoring and follow ups with neurology, Gracie was able to make it through the incident without the need for surgery.

As an aspiring baker/chef, Rebecca Cooley says that brownies are her favorite treat to make for a very specific reason.

“I made these brownies as a surprise for my mom and dad, and I had to substitute something out, because we didn’t have it, but they still turned out really good!”

Similar to baking, 17-year-old Rebecca’s life has been full of substitutions and changing ingredients.

When Rebecca was 8 years old, she fainted during recess at summer school. She was given an albuterol inhaler because she had a history of asthma, and she recovered quickly.

To be safe, Rebecca's parents, Gary and Julianne Cooley, took their daughter to her primary care doctor in Fort Wayne. He believed there was a possibility that Rebecca had an upper respiratory infection.

To confirm his suspicion, he ordered a chest X-ray. Results identified an unsuspected cardiac concern. Rebecca was referred to a pediatric cardiologist in Fort Wayne, who performed an echocardiogram, which showed that her heart was enlarged.

Within two weeks of her initial fainting episode, Rebecca was referred to Riley Children’s Health, where doctors diagnosed her with pulmonary arterial hypertension, which occurs when the pressure in the blood vessels leading from the heart to the lungs is too high, damaging the lungs. The condition can be managed to a point, but there is no cure.

“It was definitely a scary diagnosis,” Julianne Cooley said. “There’s not a cure; there are just treatments. So, I mean, it was very hard.”

For Rebecca, who also was diagnosed with an atrial septal defect in her heart, this meant a new recipe for life. Her journey would involve adding, subtracting and changing medications and treatments for stability and the best results possible.

“I think a lot of adults who would have this diagnosis would probably be taking it a lot worse than what she is,” Gary Cooley said during a visit to Riley last month. “She is very resilient. She’s taken the punches as they come. We have hurdles, roadblocks and speed bumps that she just fights through, and she adapts to whatever changes come along.”

Since 2014, Rebecca has been under the care of the pulmonary hypertension team at Riley, which includes cardiologist Dr. Michael Johansen, pulmonologist Dr. Gregory Montgomery, program coordinator/nurse Tisha Kivett, two nurse practitioners, a PH nurse, social worker and dietitian, as well as genetics and pharmacy.

The team was recently recognized as a Pulmonary Hypertension Association-accredited PH care center, just the ninth accredited pediatric program in the country.

It’s a rigorous process to become accredited, requiring highly experienced staff, advanced treatments and comprehensive care.

Dr. Montgomery understands the significant effects of this “unforgiving” disease on his patients and stresses the importance of collaboration between patients and physicians. He works closely with Rebecca and her family to navigate her care to provide the best possible outcome and find solutions when problems arise.

“For long-established patients like Rebecca, the formal accreditation of our pulmonary hypertension program by the PHA serves as validation to these kids and their families that they have indeed received the absolute best possible care in our hands,” he said.

When Rebecca was first diagnosed, she was put on remodulin and was on a continuous drip of the drug until 2021, when she had heart surgery in St. Louis. At that time, a Potts shunt was put in, and her numbers started to improve. However, over time, her numbers started to trend negatively again, so the doctors decided to put Rebecca back on remodulin.

The medications and treatments at Riley have allowed her to continue to be mobile and have improved her breathing.

She recently underwent pulmonary rehab to increase her lung function and improve her breathing. Under medical supervision, she exercised an hour a day three times a week for 12 weeks. In addition, she has heart caths every three to six months.

Rebecca relies on an oxygen tank and has a BiPap machine (a type of ventilator) for nights. She calls her oxygen tank Clank because “he always kind of clanks around.”

Clank is her constant companion. Her friends and family understand that Rebecca and Clank are a package deal.

“My friends are wonderful,” she said. “They help me. They change my oxygen. They are excited to change it for me.”

Even Julianne and Gary like to have a good time with Clank.

For dress-up day at school, not only did Rebecca and her parents find the perfect outfit for Rebecca, but they chose the perfect bow tie for Clank.

"That bow tie is from when we went to prom,” Gary explained. He and Julianne were high school sweethearts, and he let Clank wear the bow tie that he wore to their senior prom.

Rebecca hasn’t had an easy time, but she says her medical team helps keep her spirits high because they can match her sassy attitude and energy.

“They’re really a fun group of doctors,” her dad said. “They joke around and have a good time. She gives them a hard time, and they give her a hard time, so they’re a really great staff of people.”

While hopeful for a cure, the family continues to trust in the treatments that Riley offers and in the team that supports her.

“The team is phenomenal,” Julianne said. “I’m able to text or email and they’ll get back to me right away.”

That confidence in the team should only grow, with accreditation status bolstering the program’s reputation, allowing families to continue to put their trust in the Riley PH program with the knowledge that “Riley Hospital is a care destination for PH,” Dr. Montgomery said.

For now, Rebecca will continue baking brownies and other treats with her sous-chef Clank, ready to add, subtract or change any ingredients that put her on the path to success in her medical journey and in her future baking career.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Gone fishing.

That’s what Dave Boyle might say if you’re looking for him next week, next month or next year.

He’s been a renowned neonatologist at Riley Children’s Health for 34 years, but Dr. Boyle doesn’t want any fanfare as he prepares to step away from an illustrious career. He retires June 30.

Following the example of many of his fellow Riley physicians, he would rather avoid the spotlight, preferring to focus on patient care, research, education and community outreach.

Dr. Boyle admits he didn’t even want to sit down for this interview but eventually agreed, thanks to gentle persuasion from colleagues.

As for a retirement party, it could be a while. Perhaps September. And even then, he joked, he might be fishing.

He proudly shows a photo saved on his phone of his wife, Maureen, holding a giant northern pike she caught. The two met as teenagers in New Jersey when both worked at the local pool.

Fishing is a way to let go of worry, he said.

“It’s a great release.”

If you’re going fishing to catch fish, you’re doing it wrong, he once told a colleague.

“I still want to catch fish, but that’s not why I do it.”

After high school, a young Boyle would go on to college at the University of Notre Dame, medical school back in New Jersey and pediatric residency at Yale University/New Haven (Conn.) Hospital.

During med school, he worked for a landscaping company, and that’s when he found that cutting grass gave him the same Zen feeling as fishing. That’s why you can still find him out cutting a perfect lawn at his home.

LANDING AT RILEY

After a fellowship in neonatal-perinatal medicine at the University of Colorado Health Sciences Center, he and Maureen landed in Indianapolis at IU School of Medicine and Riley Hospital for Children.

That was in the summer of 1989.

“Back when my wife and I visited here, we said, ‘Can people really be that nice?’ And yes, people really are that nice here,” he said. “Jim Lemons hired me. Jim was very good about letting you be productive wherever it was you wanted to be productive."

Still, the couple never expected to be here for the next 34 years.

There were opportunities to leave. Loftier titles, bigger hospitals. But ultimately, Dr. Boyle said, “The grass was never going to be greener somewhere else.”

In 1990, the couple, who already had one child, welcomed the birth of quadruplets, quite a big deal then and now. Two of those quads work within the IU Health system.

He and his family didn’t have the benefit of the Riley Maternity Tower 33 years ago, but he considers the tower an example of Riley at its best. It took a lot of work, a lot of time and a lot of collaboration, but it goes a long way toward providing the best care for mom and baby in even the most challenging medical situations.

FROM “LITTLE BROTHER” TO MENTOR

He wore many hats during his tenure at Riley and IU School of Medicine, including serving as associate division chief of Neonatal-Perinatal Medicine alongside current division chief Dr. Laura Haneline, who counts Dr. Boyle as not just a colleague, but a friend.

“I will miss his passion for mentorship and excellence in maternity and neonatal care, and I will miss having a great friend to share daily the Riley neonatology journey,” she said.

Among the most rewarding of his roles while at Riley was as director of the division’s fellowship training program, he said. Stewarding young physicians through the program was a valuable experience.

“We pounded humility in them,” Dr. Boyle said. “Your patients will make you humble.”

He was the “little brother” when he joined what was a six-physician neonatology group at Riley, he says, younger by three or four years to the likes of Dr. Ed Liechty and Dr. Bill Engle (both of whom retired in the past two years).

“They all played a role in mentoring me,” he said.

He would pay that forward beyond the fellowship director role, building a niche in mentoring junior and mid-level faculty.

Now the division counts close to 50 physicians under its umbrella.

“SUPERB TEACHER”

Dr. Jim Lemons, who is 45 years into his career as a neonatologist with Riley, considers Dr. Boyle “the best of the best.”

“Fabulous physician and team member, great mentor and role model, superb teacher, advocate and voice for the underserved, and a passionate golfer and fisherman,” is how Dr. Lemons describes him.

“Dave is honest and insightful, sharing his questions and thoughts directly, and always with great humor.”

Many people who took the time to share comments about Dr. Boyle mentioned his humor, including Keva Rop with IU School of Medicine.

“He has led with grace and good humor and is a joy in our office,” Rop wrote.

Recently retired NICU nurse Deb Hutchison remembers that dry humor as a “pick-me-up” on some difficult days.

“His manner at the bedside could be light-hearted or appropriately serious, but always decisive,” she recalled.

It was Dr. Boyle who first mentioned Hutchison in his interview. He was talking about the “Riley way” – that humility again – and how people are always willing to help people in need. He and his wife are devotees of “Ted Lasso,” and the message of “team first, individual last” resonates.

“We don’t really brag about what we do here,” he said, which can be a blessing and a curse. The latter because Riley sometimes doesn’t get its due in the national conversation about best pediatric hospitals, even though it is consistently ranked as among the best in the country.

But what he knows is that people here look out for one another, he said.

“I think about someone like Deb Hutchison – she taught me how to be a better doctor. I learned so much from her about how to really connect with a family.”

In turn, Hutchison said, Dr. Boyle encouraged and respected nurses’ input. And parents appreciated him “because he listened, was honest and gave them credit for their knowledge of and ability to care for their baby.”

A SPECIAL PLACE

It’s that patient/family connection that he will miss the most, along with the kindness he witnessed every day, said the retiring physician.

He shows a ring on his finger that is close to his heart.

“This is my great-grandmother’s wedding ring, and there was one day when I lost it on the unit.”

An environmental services team member found it and brought it back to him.

Acts of kindness like that make Riley a place “where you want to come to work every day,” he said.

“Not that there’s not conflict, but everybody has the same objective: Take care of our patients, take care of our parents, do the best we can.”

Humility aside, he and his colleagues are an accomplished bunch.

Nationally, Dr. Boyle held key leadership positions within the American Academy of Pediatrics and the International Liaison Committee on Resuscitation to establish best evidence-based practice for neonatal resuscitation.

He was Riley’s first Fetal Center medical director and was a staunch advocate of developing the Fetal Intervention Program that launched this past year. He also served as the Riley Maternity Newborn Health Service Line medical director and established Riley’s Perinatal Center to assist the state in reducing maternal and infant mortality.

The latter cause is a passion project of his, and he will continue that work with the development of Cradle Indy, a community-wide initiative to address infant mortality in Marion County.

“Riley is the backbone organization, but we want all the healthcare organizations in the city to be involved,” he said of the program, which is modeled after a similar one in Cincinnati.

So, while Friday marks the end of the physician’s three-decade career at Riley, he will continue working toward better outcomes for babies in Indianapolis and beyond.

That still leaves him a little time to cut the grass, travel and fish, of course.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Nikolas and Hope Bitner learned that their son would be born with DiGeorge Syndrome early on in their pregnancy. They were not happy with the care they were getting in Florida. The couple had heard about the specialized care available at Riley and decided that was the right place for them.

Hope's journey with Riley began while she was still pregnant. She says the medical team helped her feel comfortable and heard during her appointments. Their son, Brewer, was born at Riley and is now in the cardiovascular intensive care unit. He's already undergone one heart surgery and will need another one in a few months.

Kingston Perez lies somewhere between wakefulness and sleep.

His eyes are partially open as if he is trying to wake up, but don’t be fooled, his mom says. He often sleeps like that.

Jennifer Perez sits quietly by her son’s hospital bed. Beside her is a table adorned with a collection of toys, including dinosaurs, his favorite. A stuffed animal is tucked into bed with him.

Kingston shouldn’t be here. He should be home playing with his toys and his little brothers and sisters. But on June 1, a gunshot struck him in the head, changing the course of his life.

Doctors at Riley Hospital for Children prepared George and Jennifer Perez for the worst. Chances of survival for their son were slim.

"There were many points throughout his course where we thought he would not make it,” said Dr. Amy Hanson, a pediatric intensive care unit fellow at Riley.

But three weeks after the shooting, Kingston is out of intensive care and continuing his recovery at Riley.

He has not spoken since the shooting, his dad said last week, but glimpses of the little boy’s personality shine through, according to Jennifer.

“His stubbornness is coming out full throttle,” she said, “and he still likes to rub my face with his hand.”

Last Monday, before he was moved out of the PICU, he worked with Play Doh in therapy and ate two bites of yogurt and ice cream, she said.

All of it is a far cry from the night he was rushed to Riley from the aptly named community of Hope, Indiana, because since that night, hope and faith have kept the family strong.

“They only gave us 48 hours in the beginning, and here he is making progress nonstop,” Jennifer said. “People who don’t believe in miracles better start believing.”

Riley neurosurgeon Dr. Laurie Ackerman operated on Kingston the night he came into the emergency department.

While it is too soon to know the true extent of his injuries, “he is making remarkable progress,” she agreed. “He’s awake, he’s interactive, and we’re quite excited.”

It was only due to the teamwork of emergency medical service workers, ED staff who stabilized him, anesthesiologists, blood bank staff, nursing, respiratory and support personnel that the boy is alive today, she said.

“They provided very critical emergency care that made it safe for us to proceed with an operation.”

That care continues post-surgery with intensive care physicians, respiratory therapists, nurses and rehabilitation staff taking over in the recovery process.

Still, she said she told the little boy’s parents, “This is a long game. Recovery from this type of injury plays out over weeks and months and is very much a team effort.”

George and Jennifer Perez say they are ready to do whatever it takes.

“Anything we can do to help him smile again,” George said. “We don’t need anything except for our son to make the best recovery he can possibly make.”

As of last week, Riley had already treated 23 children for gunshot wounds this year, a statistic that weighs heavily on staff, Dr. Ackerman said, adding it used to be a rare event.

“Everyone here cares deeply,” she said, taking the opportunity to reinforce Riley’s message to everyone in the community that safe storage of guns saves kids’ lives.

“We are the only country in the world where the leading cause of trauma death in children is gun violence,” she said.

The Safety Store within the Riley Hospital for Children Outpatient Center offers free gun locks for families.

For now, George Perez says he and his family are taking it one day at a time, grateful for the Riley team and for the outpouring of support from the people of Hope and the greater Indianapolis area.

“A lot of people are praying for his recovery, and it means the world.”

When Drs. Ben and Katherine (Kate) Mansalis look at their 10-year-old son, they see a fighter, a survivor, a champion.

A boy who’s been through so much, but who loves with his whole heart all the time.

“He is absolutely the sweetest kid in the world,” his mom says.

It’s that big heart and the skill of the Riley Children’s Health team that has kept him alive through some scary days recently, the physician parents believe.

Connor Mansalis is the center of his large family’s attention. He suffers two rare diseases – MECP2 duplication syndrome and Moya Moya syndrome. The first, caused by too much of a certain protein, causes intellectual disability and impaired motor function. The second is a cerebrovascular disorder caused by blocked arteries at the base of the brain.

The parents knew neither of these diagnoses when their son was born in 2012 when the family lived in the San Francisco Bay area. But the first diagnosis came when Connor was in the NICU shortly after birth.

“He had a lot of trouble feeding and growing, as well as low muscle tone,” Kate Mansalis recalled of her baby. “It became apparent that he was not a neurotypical child.”

CARING FOR CONNOR

Over the years, Connor has been treated at children’s hospitals in California, Oklahoma, Massachusetts and now, Indiana.

He was doing pretty well from a medical standpoint when the family lived in Oklahoma City (where Kate Mansalis still works as a hospital executive on a hybrid in-person/remote schedule).

But in February 2020, he had a major stroke and was subsequently diagnosed with another anatomic anomaly – Moya Moya syndrome – a narrowing of the carotid artery that feeds blood to the brain.

The family, which includes three other children, a host of extended family members and a caregiver for Connor, came to Indiana in August 2022 when Ben Mansalis accepted a job as vice president-chief digital officer for IU Health.

Riley Hospital’s reputation played a major role in the family’s decision to move here, the couple said.

“Our family is built around our son and his needs,” Ben said. “Connor is likely never going to be independent. Kids with rare disorders don’t have a place in this world that really understands them. And he has a rare disease times two. So, when we started thinking about where we would go, the fact that Riley Children’s has a national, and in some domains, a global reputation for caring for kids was really important to us.”

The couple, who said they found good schools for Connor and good therapists for him within IU Health, settled into their Carmel home with their large family support system last summer.

But it wasn’t until earlier this year that they learned just how important their move to Indiana was.

SAVING THEIR SON

Connor got very sick with strep throat, which turned into pneumonia, in January. They took him to Riley at IU North, just seven minutes from their house. He was seen right away, but doctors quickly realized Connor, who was struggling to breathe, needed to be intubated and placed on a ventilator.

He was transported via IU Health LifeLine to Riley’s Downtown campus, where he remained for about a week.

While there, the Mansalises met Dr. Rabia Qaiser, a Riley neurosurgeon who specializes in the treatment of Moya Moya and who had trained with a specialist in Boston whom Connor had previously seen.

“It is so nice to have a Moya Moya specialist right here and know that if Connor ever needed any other intervention, we wouldn’t have to travel,” Ben said.

Connor’s inpatient treatment at Riley in January was followed by an even more serious admittance in March, during which he was intubated for 10 days.

“It was pretty intense, but everyone was just awesome,” Ben said. “Riley has all of these renowned specialists in the hospital, and they have a developmental peds unit in the hospital that understands what happens with these kids.”

Even at IU North, there is an embedded Riley presence, and that team knew immediately what to do, the couple said. They shudder to think what might have happened if they did not have access to specialized care.

“He probably would have died,” Ben said. “When those doctors at Riley North looked at Connor – number one – they had close consultation with Riley Downtown, and they knew they needed to intubate him early. Number two, they know how these kids respond to a ventilator and anesthesia and that managing their blood pressure is different.

“I think about the IU Health promise – care designed for you,” he added. “It’s hard to design care for this kid because it’s hard to know kids like this. But all of the things they did helped us have more time with him.”

SURROUNDED BY SUPPORT

It wasn’t just how the Riley team cared for Connor, it was how they cared for each other that impressed Kate and Ben, who is also a physician.

“We live in a household of 11 people – kids and extended family – and we recently got a puppy,” he explained. “It’s a pretty active house, but everybody pitches in and takes care of one another. We are coordinating all the time.”

As a hospital chief medical officer in Oklahoma City, Kate has her eyes trained on care.

“We noticed that just like in our home, these care teams at Riley took care of one another. They were always highly coordinated,” she said.

“I still work as a hospitalist (in Oklahoma City), and I know my nurses,” she added. “I don’t know the people at Riley well, and it’s a different experience of course to be at the bedside of a family member and watch the nurses and the respiratory therapists and the patient care techs.”

As a physician, she said, she might see her patients for 15 to 20 minutes a day, write some orders, talk to family and then leave. It’s what happens afterward that is critical to the patient.

“Those care plans have to be carried forward, and it requires the human touch at the bedside,” she said.

She marveled at how attentive the staff was, not just to Connor and the family, but checking in on each other frequently and offering a helping hand.

“It was incredible to watch how supportive they were of each other, and it really helped us feel safe,” Kate said. “Connor is taken care of because there are people here who take care of each other. The culture in that hospital is really remarkable.”

SAYING THANK YOU

Ben felt so passionately about the care his son received that he spoke during a Riley One Team Town Hall in the spring, recognizing and thanking everyone in the hospital who played even a small part in Connor’s care.

“There’s this really weird thematic irony I have going on in my head,” he said later. “MECP2 is this neurodevelopmental protein that is in excess in my son’s brain. The thing it does is regulate connection and there’s a problem with the ability of his neurons to make connections. As I think about where we need to go as humans, as hospital systems, the theme of connection is embedded in the pathophysiology of my son,” he said.

“It’s like the problem he’s trying to solve. He’s trying to help his cells coordinate and connect while we are around him trying to give him those services by trying to understand and connect. I see at Riley a team that cares about delivering on the promise of the organization, and I think we are uniquely set up to do that, which I am so grateful for, and that’s part of the reason we’re here.”

Today, Connor is doing well, in no small part due to the follow-up care he has received and the in-home therapy regimen that helps keep him healthy, Ben said.

They hesitate to name team members who have been standouts this past year for fear of leaving someone out, but the couple are grateful to Riley pediatrician Dr. Christine Nix, in particular.

Dr. Nix made such an impression on 3-year-old Rebecca Mansalis that the toddler sometimes pretends to be the physician – white coat and doctor kit in hand.

Dr. Jason Espinoza, who specializes in pediatric critical care medicine, also made an impression, as did Dr. Nathan Swinger and Dr. Lauren Castaneda. And, of course, the team of nurses and other clinicians in the PICU were nothing short of amazing, the couple said.

They now sport Riley license plates on their cars, Ben said, a reminder of the pride and gratitude they feel toward the hospital, which is again ranked in 10 out of 10 pediatric specialties by U.S. News & World Report.

“I don’t think our son would be here today if it hadn’t been for Riley.”

Maria Dodson was a teenager when she first came to Riley Hospital for Children for treatment of a heart condition.

Fast forward 12-plus years, and she’s back – this time as Dr. Maria Dodson.

The new pediatric resident joined two dozen other residents with the IU School of Medicine for orientation last week – well on her way to her dream of becoming a physician in a rural healthcare setting.

She didn’t know when she was diagnosed with Wolff-Parkinson-White (WPW) syndrome at about age 10 that it would lead her to a career in medicine, but the impact was inescapable.

WPW is a relatively common heart condition that causes the heart to beat abnormally fast for short periods of time. The cause is an extra electrical connection in the heart. The condition is present at birth, although symptoms may not develop until later in life.

For Dodson, symptoms started when she was in middle school in Newburgh, Indiana.

“My heart would go into these really fast rhythms. We made many trips to the ER and saw different cardiologists,” she said.

Lucky for her, she eventually became a patient of Dr. Joyce Hubbard, a pediatric cardiologist with Riley who passed away in 2014. (An endowment and internship in cardiology at Riley is named for Dr. Hubbard.)

When Dodson’s condition worsened a couple of years later, Dr. Hubbard performed two heart ablations at Riley, the first in December 2010, and another in May 2011.

“I’m extremely fortunate to have had her as a surgeon. I haven’t had any problems since,” Dodson said. “It changed my life, and it also opened me to the healthcare field. It showed me this career path.”

That path first led her to the University of Evansville, near her home, where she majored in neuroscience and competed on the golf team. From there, she went to Marian University in Indianapolis for four years of medical school.

She says she stayed open-minded during those clinical years to what kind of medicine she would like to practice but ultimately felt called to pediatric medicine.

“This was the population I wanted to serve,” she said.

As for residency – three years of intense training in a hospital setting – she hoped to come to Riley but tried to manage her expectations.

“I didn’t want to get my hopes up. It’s a very prestigious, competitive program.”

In March, however, she learned she had matched with Riley and couldn’t wait to get started.

She will train to be a general pediatrician and could choose to subspecialize and do a fellowship after residency. But as of now, she plans to be a GP, focused on rural medicine.

“I’d like to stay in Indiana. There’s definitely a need for a generalist in these small, underserved communities,” she said. “I think we can do a lot of good.”

While no one in her immediate family works in healthcare, she says it was her experience at Riley that brought the career path into focus.

“It was incredible the way I was treated at Riley. I thought if I can make someone feel the way I felt during my time here, I would be extremely fulfilled and could make a difference,” she said.

Dodson and her husband, Eric, a mechanical engineer, have made their new home in Brownsburg as she embarks on the latest step in her training as a physician.

“I’m excited to meet my patients. I know it’s going to be a lot of learning, and I’m going to grow a lot, but I know that they are going to change my life,” she said.

“When I think about pediatrics, it’s really treating the whole family, so that’s what I’m most excited about.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Riley Children’s Health earned national ranking in all ten of the pediatric specialties ranked by U.S. News & World Report. Two of Riley Children’s specialty programs ranked in the top 10 nationally: urology at #3, and pulmonology and lung surgery at #8. Riley is one of only 23 children’s hospitals to have ranked in 10 out of 10 pediatric specialties.

Based on a combination of clinical data and reputation among pediatric clinical specialists nationwide, U.S. News & World Report ranked Riley Children’s in the following specialties:

• Cancer
• Cardiology & Heart Surgery
• Diabetes & Endocrinology
• Gastroenterology & GI Surgery
• Neonatal Care
• Nephrology
• Neurology & Neurosurgery
• Orthopedics
• Pulmonology & Lung Surgery
• Urology

“Riley’s consistency in being ranked by U.S. News and World Report reaffirms that our team members are committed to providing the best care to Hoosier children,” said Dr. Mara Nitu, chief medical officer of Riley Children’s Health. “We are grateful for the compassion and expertise our clinicians continue to offer to patients and their families. We thank our patients and their families for trusting us with their care.”

“Riley Children’s Health has been designated by U.S. News as one of the top children’s hospitals again this year. We do not take this distinction lightly and we are proud Riley Children’s is the best hospital for Hoosier children,” said Gil Peri, president of Riley Children’s Health. “The Riley Children's team of pediatric experts are dedicated to improving the health of children in Indiana and across the country. This recognition represents external validation of the life-changing care our team provides on a daily basis."

U.S. News & World Report introduced the Best Children’s Hospitals rankings in 2007 to help families find the best medical care for their children. The rankings provide detailed information about each hospital’s performance.

To gather clinical data, U.S. News & World Report surveys hospitals about objective measures such as patient outcomes, including mortality and infection rates, as well as available clinical resources and compliance with best practices. In addition, U.S. News & World Report asks physicians around the country to name up to 10 hospitals in their specialty that provide the best care to patients with serious conditions, without considering location or expense.

This year’s rankings will be published in the U.S. News & World Report’s “Best Hospitals 2024” guidebook, available mid-September.

*Riley Children’s Health is tied with three other children’s hospitals in the Midwest for third in the rankings.

She was known as “Baby C” in the beginning.

Now better known as Laura Koke, clinical program manager for nursing practice at Riley Children’s Health, she is one of the Taylor quadruplets who caused quite a stir among Indianapolis media back in 1983.

Koke and her three siblings arrived on the scene to much fanfare at IU Hospital in Indianapolis (now IU Health University Hospital). They were the first set of quads born at University and just the second surviving four-some born in the state.

“All four of us are doing well and are very grateful to Riley for all we have been given,” Koke said.

On Friday, June 9, the siblings and spouses celebrated their 40^th birthday with a surprise trip to an Escape Room planned by their parents, Phil and Theresa Taylor of Indianapolis.

It’s been quite a ride for the family since that early morning in 1983 when Theresa Taylor delivered four tiny babies into the hands of a team of physicians and nurses. Actually, there were multiple teams – one for each baby and for mom.

Out came David, Katie, Laura and Julie – weighing a combined 11½ pounds. They were born 10 weeks early and were rushed over to Riley Hospital for Children’s neonatal intensive care unit.

But the “womb-mates” needed only a week of NICU care before being transferred back to University for a few weeks to continue growing.

Phil Taylor likes to tell the story of how the number of babies seemed to keep multiplying while his wife was pregnant.

One early ultrasound showed twins, he recalled. An ultrasound a month later showed triplets, and still another the next month indicated quadruplets, Taylor said.

“No more ultrasounds!” he jokingly pleaded with the doctor.

Even so, up until the delivery, there was a question whether there might be a fifth baby in there, Theresa said, but the two-dimensional ultrasound had picked up one baby twice.

Among those caring for the babies in those early months were neonatologists Dr. Richard Schreiner and Dr. Jim Lemons, both of whom would go on to have sterling careers at Riley.

“They were wonderful,” Theresa said. “We could not have asked for more kind-hearted, knowledgeable doctors.”

When the quads went home, they joined big sister Lynn, who was 2½ at the time. It made for a busy household.

“We were doing the same as all parents,” Phil recalled, “just a little more intensely. We would change all diapers at the same time and the same with feedings. If one woke up hungry, we’d wake them all up and feed them.”

It was the only way they could get any rest themselves.

“When they first came home, it took an hour and a half to feed all four of them, with two of us feeding them. And they ate every two hours,” Theresa said. “That at least gave us a 30-minute break.”

Fortunately, those frequent feedings didn’t last for too many months. Still, sleep was hard to come by.

“We didn’t sleep for about five years,” Theresa joked.

About a month after the babies came home, a group of nurses who had cared for them in the hospital offered to babysit. It was an exciting time for the young parents, who planned where to go and what to do, while also writing out a detailed schedule for each baby.

They forgot just one thing. “We forgot to tell them which baby was which,” Theresa said, chuckling at the memory.

As they grew, she said, she sometimes would regret that she and her husband couldn’t give them more individualized attention, but it worked itself out.

“No matter your situation, you’re not going to give your kids everything, and that’s good,” she said. “You try to give them what they need, and even then you might come up short. But they had each other.”

Koke, who had health issues as a child, was in and out of Riley frequently. It made an impression on the youngster.

“I knew from the time I was 5 that I wanted to be, not only a nurse but a Riley nurse,” she said. “And I really never wavered.”

She began her Riley career in 2008, working in the PICU and hematology-oncology clinic before being named to the nursing practice team. Koke received the coveted Margaret Martin Award for nursing in 2016.

When she started in hem-onc, her preceptor that first day just so happened to be Susan Litts, who had been a nurse at University Hospital when Koke and her siblings were born.

“I said, ‘I’m Baby C!’ She couldn’t believe it.”

Phil and Theresa Taylor couldn’t be prouder of all their kids, but they are especially pleased to see “Baby C” follow her dream back to Riley.

When she was little, she had a cry that demanded attention, her mom said.

Today, “she’s still advocating not just for herself and her siblings but for all the nurses in the hospital,” Theresa said.

Looking back, the couple say they can’t speak highly enough of their experience with Riley and feel blessed to have a children’s hospital in their backyard.

The quads – David Taylor, Katie Sullivan, Laura Koke and Julie Critser – are all married and parents themselves now. The four have given their parents 13 grandchildren, plus three more grandkids from older sister Lynn Glass.

Asked what goes through her head when she looks at her family today, Theresa doesn’t hesitate.

“How lucky we are, how blessed we are. I don’t even buy lottery tickets because I’ve already won the lottery.”

Previous stories:

Indy’s First Quadruplets: Baby No. 3 Just Had Twins And Is A Nurse At Riley - Laura Koke never forgot the nurses who took care of her at Riley as a little girl. And she vowed from the age of 5, she would be one of them some day.

Indy’s First Surviving Quadruplets Turn 34 Today - They were born in the wee morning hours of June 9, 1983 and promptly made headline news. Riley set up a special telephone number for media to get recorded updates.

Rikki Clark sat listening in the quiet auditorium as Taryn Fledderman talked about identity, acceptance and love.

Fledderman, a Riley Children’s Health social worker, was speaking at a Rainbow Read in celebration of Pride Month.

“Build a community for your kids that will unconditionally love them, letting them know they have multiple safe people,” Fledderman said.

While people are beginning to have more open minds, the social worker said, the trick is to encourage them to open their hearts as well.

For Clark, who identifies as gender queer and uses “they, them” pronouns, it was an important message.

The 27-year-old certified medical assistant in Riley’s nephrology clinic recently gave birth to twin boys.

Emmett and Emerson, born at Riley’s Maternity Tower, are now 3 months old, and Clark wants to make the world a safer place for them to grow up.

“Pride is so much more than just June for me. Pride is who I am, and it is who I want my kids to be – to be able to have pride in who their parents are.”

Clark is married to Brandon (he/him), a trans-masculine man, so the journey of becoming parents was difficult and expensive, they said.

“We hold pride in that too. We were able to say, this is what we want. It’s my life, it’s my family, and it’s my future. That’s what Pride is to me.”

Clark said that for several years they didn’t feel like they had a community because they were not involved in a lot of the activities or advocacy work of the LGBTQ+ community.

That changed when Clark began working at Eskenazi Health as a medical assistant with the gender health program.

“There I connected with the community and dove deep into it. That’s when I took off. I started educating small businesses and schools on terminology the community uses, what to say and what not to say.”

Coming to IU Health has presented more opportunities to be involved, including with the IU Health Pride affinity group.

“I love IU Health, and there’s obviously a lot of work that needs to be done statewide, but it is trying,” Clark said. “Leadership is trying. That’s what matters."

Clark hopes to someday work with the organization’s Diversity, Equity & Inclusion team “so I can continue to grow where IU Health is headed.”

There was only one way out of the burning car.

Right through the flames.

Kelsie Bullard was just 16 years old on Christmas Day back in 2016 when she crashed the car she was driving, with her best friend in the passenger seat.

The car caught fire on the driver’s side, and the dash fell onto both girls’ laps, making escape difficult. Her friend was able to crawl out the passenger door, but Bullard couldn’t move her body across the car.

“I decided I had to go through the fire, or I was just going to be stuck,” said the now 23-year-old. “I opened my door and went through the flames; that’s why my left side was burned worse than the right.”

She suffered severe burns on both legs, her back and her left hand, but she pulled herself out.

She’s been pulling herself out of danger ever since, with help from the Riley Children’s Health burn team and the occupational therapists who helped get her back on her feet.

“I was a teenage girl who had body image issues before the accident,” she said. “After the accident, I wasn’t sure I was the same person anymore, having all these scars.”

Her scars went deep. Emotionally and physically.

She had a fractured relationship with her family at the time and had become used to being on her own, she said.

“I didn’t feel that I really mattered in anyone’s life besides my grandparents and a few friends.”

She remembers how her occupational therapists at Riley came to recognize that she was not a typical pediatric patient and began adapting their approach.

“My OTs at Riley took the time to get to know me and realized they couldn’t treat me like a 12-year-old.”

The experience stayed with her, and now Bullard is in her second year of IU’s doctoral program in occupational therapy.

It was her experience at Hoosier Burn Camp, however, that changed the course of her life, she said.

“When I went to burn camp, I was only two months out of the hospital. I hadn’t accepted my injury and was still processing all my emotions.”

She admits she was not in the best frame of mind. Yet, she was met with love.

“They showed me love right off the bat,” she said. “They loved me before I loved myself. From the day I walked in, they accepted me, which I struggled with, not only because of the burns but because of my family dynamic. Was I truly loved?”

It was undeniable, she realized.

“Every single person there means it. They showed me you can love yourself as you are. It changed my outlook.”

That’s why she returns to Hoosier Burn Camp every summer as a counselor, helping other kids going through similar challenges.

They help her as much or more than she helps them, she believes.

“Every year, I learn something amazing from the kids. I told my girls (campers) last night I admire them. They look at their scars as battle wounds; it makes them feel strong. I want that. They have better coping skills, more confidence. I admire that.”

Bullard hopes to work with pediatric patients as an OT and currently is training to be a volunteer peer support leader for burn patients at Riley.

“If I can give that back to one kid – the first time you felt love, or the first time you felt joy or felt included – that means everything to me.”

Hoosier Burn Camp was conceived by the Indiana Fire Marshal’s Office and Riley Hospital for Children more than 25 years ago to help kids ages 8 to 18 heal emotionally and socially from serious burns. Learn more at www.hoosierburncamp.org.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Another weekend in Indianapolis. Another two dozen shootings.

But this time, four of those shootings involved children. Kids ages 8 to 13 who should be enjoying summer vacation are instead in the hospital after being shot.

Whether intentional or accidental, each shooting began with easy access to a firearm, and that’s what physicians with Riley Children’s Health want to change.

ON THE FRONT LINES

Trauma surgeon Dr. Matthew Landman and emergency department physician Dr. Cory Showalter are among those routinely called to help save the lives of young gunshot victims who are rushed to Riley, a Level 1 pediatric trauma center.

It wears on their psyche, just as it does on everyone in the emergency department and other areas of the hospital who are called in to support these patients and their families.

Drs. Landman and Showalter authored an opinion piece that appeared on the IndyStar website Saturday, even before some of the most recent shootings. In it, they call for parents and other caregivers to take common-sense steps to keep guns out of the hands of kids.

“No family believes injuries related to guns will happen to them,” the physicians write. “The reality is these injuries can happen to anyone at any time, and the statistics prove it. In 2020, firearm-related injuries of all types (homicide, accidental, suicide and undetermined) became the leading cause of death in children and adolescents (ages 1-19), according to the Centers for Disease Control and Prevention.”

As of June 12, Riley had treated 23 children for gunshot wounds this year alone.

“We don’t want kids to get shot,” Dr. Showalter said in an earlier interview.

It’s not a political statement, but rather, something everyone should be able to agree on, he believes.

But as medical director of the emergency department at Riley Hospital for Children in Downtown Indianapolis and regional medical director for pediatric emergency medicine, Dr. Showalter sees far too many young patients with gunshot wounds.

Whether it’s an errant bullet fired into a house, striking a young girl inside (as happened earlier this year) or an 8-year-old boy injured when he accidentally shot himself Friday, the toll is crushing on the patient, the family and the community.

More than 1,600 children 17 and younger were killed across the country last year in shootings – accidental or intentional, according to Gun Violence Archive. This figure does not include suicides.

In all, 41 pediatric patients suffering gunshot wounds came through Riley’s ED in 2022, according to trauma epidemiologist Jodi Raymond. Of those, 32 were violent or intentional, which include drive-by shootings.

The remainder were classified as unintentional, where a child gets hold of a gun and it goes off accidentally.

TALKING ABOUT TRAUMA

In December, Dr. Showalter and Dr. Landman were joined by Riley clinical psychologist Zach Adams in one of Riley’s trauma bays for a discussion about the toll of trauma in general, but more specifically gun violence.

Gunshot wounds may reflect a comparatively small percentage of overall trauma cases, but they have a huge impact, Dr. Showalter said.

“This is literally a lifechanging thing for the patient and family and something that really sticks with the team. I’m very fortunate to work at a place where we support each other.”

Of the more than 50,000 patients who came through the emergency department at Riley last year, about 2,000 suffered traumatic injuries, Dr. Landman said. Loosely, 40 to 60 of those are typically gunshot-related, he said.

“Gunshot wounds are by definition all-hands-on-deck,” he said, “our highest level of activation.”

He’s referring to a paging system that notifies all team members who need to be involved with this level of trauma.

When EMTs and paramedics alert Riley that a gunshot victim is headed to the hospital, it’s not just surgeons who answer the call. It’s specialized nurses, technicians, radiology, the charge nurse in the operating room, chaplains, social workers … the list goes on.

“All of those people will get a notification at the same time,” said Dr. Landman, who has been a surgeon at Riley for seven years and trauma medical director for the past two. “That’s our signal to stop what we’re doing and immediately come down to a room like this one.”

“WE’RE ALWAYS READY”

They will immediately get to work evaluating and treating the patient’s injuries before determining if the child needs surgery and/or admission to the hospital’s intensive care unit once he or she is stabilized.

“It’s a pretty impressive response for each of these patients, and because we do trauma care a lot in this hospital, we’re pretty good at bringing all of those resources to bear 24/7,” Dr. Landman said.

“What’s difficult about all trauma patients is that the injury could be relatively minor, or it could be something where we’re doing maximally invasive surgery, even in a room like this one to try to save a life. And you don’t always know what that’s going to be.”

It takes an enormous infrastructure to support the care of one of these patients, Dr. Showalter added. That includes skilled team members, of course, but also technology and planning.

“And like Matt said, you don’t know ahead of time which patient will need hours of immediate acute care or which one will be ready to go home. So, we’re always ready.”

ANXIETY AND PTSD

As a clinical psychologist who focuses on the behavioral health of children and families, Zach Adams knows that anxiety and some degree of post-traumatic stress are real for the patient, the family and the Riley team.

Often, when patients have more serious injuries that require long-term recovery, including physical therapy and pain management, not only are there physical hurdles, there are daily reminders of what happened, he said.

“It’s a disruption to people’s lives. It can change kids’ sense of safety. How they feel at home or in their neighborhood can dramatically impact their behavior and their relationships,” Adams said.

Roughly a third of kids impacted by trauma continue to have trouble coping even months after an event. Signs include difficulty sleeping, clinginess, anxiety, irritability, stomach aches and regressive behavior.

And it’s not just those kids who are affected. It’s their siblings, their cousins, their friends and classmates.

“Those ripple effects are not reflected in the numbers that get reported out,” Adams said. “These waves (of violence) are really doing a number on how people are able to go about their lives. It’s not just the kids who show up at the hospital. It’s very important to take care of them, but there are hundreds and thousands of other kids affected.”

CARING FOR EACH OTHER

And being exposed to horrific, emotionally draining work is tough for team members – those who are directly responsible for care and those who are part of the process that prepares the response.

“Not only are we prepared to take care of the patient and family at the hospital, we are also prepared to support each other,” Adams said.

“This is what we all train to do – take care of anyone that comes through the door, but it’s a hard thing to see sometimes,” Dr. Showalter said. “I have four kids, and some of these kids look a lot like my kids.”

Besides the immediate trauma team that shows up in the emergency department, there is a large team of professionals who will care for the patient if he or she goes to the ICU, and a trauma team will follow that patient, Dr. Landman said.

In addition, inpatient rehab, case managers and mental health professionals will come alongside the patient and family, not only in the acute care setting, but in the long term. Support staff, including environmental services team members, also play a critical role, he said.

“Without them, the whole thing falls apart. It takes an entire team to care for these patients, and I feel very fortunate to be a part of that team.”

YOU CAN HELP

There will always be accidents that put kids in the hospital, but gun violence shouldn’t be among them, Dr. Landman said. Talk to your friends and family about safe storage of firearms, he said. And talk to your kids about gun safety.

“There are all kinds of reasons why people get shot,” he said, including unsafe storage of a firearm in the home, “but the downstream effects are horrific.”

“There’s a consequence for a bullet going in the wrong place,” Dr. Showalter added. “A whole community is affected. People are struggling to reach their full potential because they’re held back by exposure to violence. People must be aware of these consequences.”

According to healthychildren.org, powered by the American Academy of Pediatrics, roughly a third of U.S. homes with children have guns. An estimated 4.6 million kids live with unlocked, loaded guns every day.

It’s not enough to hide a gun. Firearms should be locked in a safe with the ammunition stored separately.

Families who need gun locks can receive two free locks from the Indiana University School of Medicine Safety Store within the Riley Hospital for Children Outpatient Center.

Rather than feeling helpless, Dr. Landman suggests working together to decrease incidents of gun violence, first by advocating for safe storage of weapons.

“It’s easy for us to sit here and prescribe solutions, but I don’t think anything’s going to happen unless communities rise up and start doing what they feel is important in their community to decrease these kinds of injuries.”

If you’re looking for other ways to help, donate blood, he said.

“Some of these patients require an incredible amount of blood to save their lives. Even a simple act of donating blood really does help us care for not only trauma patients, but all patients who are going to need that type of resource.”

Check out more information about guns and kids.

This story has been updated since it originally published in January of this year.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

El equipo del Riley Maternity Tower esta ofreciendo una clase de lactancia en español. La clase sera virtual y gratuita. Una consejera de lactancia hablara sobre posiciones de lactancia para los bebes, problemas comunes y mucho mas. Una consejera de lactancia presentara la informacion y ayudara a que los padres se sientan preparados para esos primeros dias con su bebe.

Para inscribirse, visite www.iuhealth.org/childbirth.

Si tiene cualquier pregunta, por favor llame 317-948-7401.

Silas Overpeck doesn’t remember the rough days at Riley Children’s Health. He remembers the toys and the fun.

So it was fitting that the 4-year-old arrived at Riley on Tuesday afternoon pulling a wagon full of toys to deliver to other kids in the hospital.

Silas, his two siblings and his parents, Michael and Jenna, returned to Riley to say thank you exactly one year after his hospitalization.

It was June 6, 2022, when the then-3-year-old was rushed to the emergency department at Riley, after the normally active boy began complaining of leg pain, often stumbling and falling.

Thanks to hospitalist Dr. Jodie Meara, neurologist Dr. Laurence Walsh and other members of his medical team, Silas was quickly diagnosed with Guillain-Barre Syndrome, a rare neurological disorder in which the body’s immune system attacks the nerves, causing numbness, weakness and sometimes paralysis in the extremities.

The condition is believed to be triggered by an acute bacterial or viral infection, but tests for COVID, flu and other infections were negative, Jenna Overpeck said.

Because Dr. Meara pushed for an MRI and lumbar puncture within hours of Silas’ arrival in the ED, the diagnosis of GBS meant treatment with IVIG infusions (intravenous immunoglobulin therapy) could begin quickly, leading to rapid improvement.

Today, you’d never know Silas was down for the count last year. He plays soccer, swims, rides his bike and will tell you all about the trampoline he got for Christmas.

“It feels good to come back here,” Michael Overpeck said. “It is refreshing to see the doctors and tell them thank you, and now they can see his progress. I’m sure it means a lot to them, knowing that their chosen profession and their passion really makes a difference.”

Drs. Meara and Walsh came down to the lobby of Simon Family Tower at Riley to reunite with Silas and his family, exchanging hugs and high fives.

Silas presented each with a hand-drawn thank-you note, featuring a photo of him on the soccer field tucked inside.

“I love it,” Dr. Meara said, as she knelt down to talk to Silas and listen to him explain where she fit in amid the people figures he drew on the cover.

“This is awesome to get to see him again. We don’t get to do this very often,” the physician said. “He’s so active now, I love it. That’s always our goal.”

Dr. Walsh was equally impressed with his card, promising to save it as a reminder of why he got into medicine.

“I have a cubby in clinic where I put notes and things, so I’ll put this up there,” he told Silas.

As for the visit – and the toys – the neurologist described it as “amazing positive feedback” after an admittedly scary time for parents.

With GBS, he said, 80 percent to 90 percent of patients do well, but it matters how fast they get treatment.

“It was a dark time, but you guys calmed our nerves and made us trust you so much,” Jenna Overpeck told the doctors. “You sat with us and talked with us, answered all our questions. It’s something we will never forget.”

Formerly an ICU nurse with IU Health Methodist Hospital, she understands how important it can be to medical professionals to see former patients doing so well.

Being able to thank members of Silas’ medical team in person and to bring new toys for the Riley Cheer Guild, which counts on donations to restock its toy room, was a great way to honor the anniversary of her son’s diagnosis, she said.

“This is a place of hope and a place of healing. That’s what we feel when we walk into Riley,” she said. “Yes, there are hard things, but it is a place of hope.”

Silas expresses it better than most, his dad said. Whenever he sees a Riley sign or license plate, he shouts, “That’s my Riley!”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

She might not be a trapeze artist, but Sienna Partlow traverses the high-flying ropes course at Hoosier Burn Camp with the confidence of a 13-year-old girl who has nothing to lose.

Or nothing to fear.

Fifty feet above the expansive woods at this special summer camp in Brookston, Indiana, she pulls, pushes, swings, crawls and climbs her way through the “sky walker” course, safe in the knowledge that she will be caught if she falls.

That feeling of safety comes not only from the harness attached to her small frame, but also from the people around her – fellow campers and counselors who cheer for her every step of the way.

Sienna is one of 49 campers participating in this year’s Hoosier Burn Camp summer camp, which is celebrating its 25^th anniversary.

All have suffered serious burn injuries at some point in their lives; most were treated at Riley Children’s Health, a partner in this annual weeklong escape from the city.

Here, they get to be “just one of the kids,” says Caitlin Dougherty, a longtime child life specialist in the burn unit at Riley who recently joined the team at Hoosier Burn Camp as program manager.

“I can’t say it any better than what one of our kids shared last night,” she recalled. In his words: “We’re not here because we wear the same shirts or the same shoes. We’re here because we wear the same scars. And here, we can be just who we are.”

Unlike at home, they don’t have other kids staring at them or peppering them with questions. Or even worse, wanting to touch their scars.

“It’s so important for these kids,” Dougherty said. “They get to be in a place where they can be a kid and where people love them for who they are.”

Hoosier Burn Camp was conceived by the Indiana Fire Marshal’s Office and Riley Hospital more than 25 years ago to help kids ages 8 to 18 heal emotionally and socially from serious burns.

The summer camp, housed at the YMCA’s Camp Tecumseh northwest of Indianapolis, is just one of many programs the organization offers throughout the year for burn survivors and their families. (Some lucky teens will be going white-water rafting in North Carolina this summer; others will be traveling to Alaska with the organization.)

The camp is free for participants. Fundraisers and other in-kind support remove the financial barrier for families.

This is Sienna’s third year at camp. She was burned at age 10 in a bonfire accident and remembers having a tough time in the hospital.

“I screamed at everyone at Riley,” she said.

She’s in a much better place now, pushing herself to get stronger. Activities like the ropes course, swimming, horseback riding, canoeing, archery, fishing, yoga, crafts and cooking all help stretch campers’ muscles – both physically and mentally.

Daniel Lynch, 18, says he keeps coming back to camp each year because he likes the family it creates.

As an older teen, he is participating in the Campers in Leadership Training program, with an eye on becoming a volunteer counselor in the future.

“It creates a positive environment and makes you feel really welcome,” said the aspiring firefighter/paramedic.

As he waited to start the ropes course, he admitted to being nervous.

“I’m not gonna lie. I’m kind of scared of heights, but we conquer our fears one at a time.”

He watched while Lexie Taylor, 18, conquered the course. The fellow Decatur Central High School graduate has been coming to camp for 10 years.

“I like to see all my friends,” she said.

Volunteers are the “secret sauce” that keeps the camp going every year, says Mark Koopman, executive director. Whether it’s area firefighters, nurses, videographers, counselors or cooks, those giving their time say it’s the best week of the summer.

Kelly Rowls has been coming to camp longer than any of the kids here have been alive. In fact, the Riley nurse has volunteered her time on the medical team since the first burn camp in 1999.

“This helps me stay good at my job,” the burn nurse said during a break for lunch. “I can see full circle from what I do there (working with burn patients at Riley) to here.”

Aries Smith, 16, Natalie Maled, 15, and Mikalen Isbell, 16, all from the Indianapolis area, have spent their fair share of time at Riley. For Aries, who suffered burns at age 2 and again at 10, this is her eighth year at camp.

She and her two friends, who met last year when they stayed in the same camp cabin, were ready to climb into canoes on a 90-degree day last week.

Aries and Natalie ended up tipping their canoe in the middle of the lake, but there was no panic. Both know how to swim, and they were wearing life jackets. They simply swam their canoe back to shore, grateful for the chance to cool off.

“I just really love the environment here,” Natalie said. “You’re able to connect with people who have been through the same thing, and it’s really fun.”

That’s one takeaway for Aries – “Definitely you find out you’re not alone,” the teen said.

“When you go through something like this, you learn the strength you have,” Natalie added.

Riley child life specialist Taylor Cox recently moved over to the burn unit to take over Dougherty’s position there. Coming to camp this year was a no-brainer for her.

As she rounded up kids who were participating in a Top Chef-style competition outside a cabin, she marveled at the toughness of burn survivors.

“It’s such a family, and I wanted to be part of that outside the hospital as well,” she said. “It’s so rewarding for me to see the other side of things. In the hospital, it’s traumatic. This is a traumatic injury that they go through. It’s life-changing and we’re in the thick of it in the hospital.

“It’s so great to come out here and see these kids being kids and getting to do all of the things any other kid would get to do,” Cox added. “Being part of making that experience possible for them is just incredibly humbling and rewarding.”

Learn more at www.hoosierburncamp.org.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Kelly Pauley might not think of herself as a hero, but she definitely qualifies in the eyes of her 7-year-old daughter.

And in the hearts of her colleagues at Riley Children’s Health.

Pauley, a nurse on 7 West for nearly 15 years, has spent the past year and a half juggling her jobs as a nurse and a mother with a lifechanging diagnosis of Stage 3 inflammatory breast cancer, a rare and aggressive type of cancer.

Diagnosed at IU Health Saxony Hospital right before Christmas in 2021, she spent the next year undergoing treatment at IU Health North Hospital, which included chemotherapy, radiation and targeted infusion therapy.

“Can I just give a shout out to everybody at the Schwarz Cancer Center (at IU North),” she said to express her gratitude for their care. “The ladies at the front desk are amazing, the infusion nurses are fantastic, and my medical team, Dr. Erin Newton and Dr. Folasade Imeokparia, are the absolute best.”

In May of last year, she had a mastectomy on her right breast, and in September, she will undergo surgery to remove her left breast and reconstruct both at IU Health University Hospital.

Pauley, 38, has an aunt who was diagnosed with breast cancer at the age of 35, and she lost her grandmother to the same disease later in life. So she knew to watch for changes in her own body.

When she discovered a lump in her right breast, she got a mammogram and biopsy, which came back negative, but not long afterward she began noticing changes in her breast. That’s when she returned for another mammogram and biopsy two days before Christmas 2021. And the results were clear. She began treatment within the week.

Throughout all of her treatment, with the exception of her recovery from her initial surgery, she has continued to work.

For her, it’s been another form of therapy, helping to distract from the battle she was facing by focusing on others.

“It wasn’t easy,” she said, “but I love my job.”

And she learned over time that if her job brings her joy, it makes sense to keep doing it.

It helps that she has wonderfully supportive colleagues, she said, who set up a meal train for her, organized a T-shirt fundraiser, hired someone to clean her house and offered daily words of encouragement.

Kelly Orr is the clinical manager for 7 West and reached out to share that Pauley had been named a Hometown Hero by a local HVAC company. The prize? A new heating and air-conditioning system for her Noblesville home, as well as celebratory meals at her home and on her unit at Riley.

It came just as the summer season kicked in, so Pauley and her daughter are thrilled to enjoy a cooler house. And it’s one less worry on her plate.

Despite dealing with a difficult diagnosis over the past year-plus, “she hasn’t let it break her spirit,” Orr said.

“She comes to work each day with a smile on her face and ready to take on whatever new challenge is brought her way. Kelly brings fresh ideas to our unit and is always willing to lend a hand to her peers.”

Becoming a Riley nurse wasn’t in Pauley’s plans when she went away to college in Arkansas 20 years ago, but then her little sister became ill and required frequent treatment at Riley.

“It was hard for me to leave behind my baby sister, but when I visited, the nurses at Riley were amazing,” she said.

At that point, she said, she didn’t know what she wanted to do – she was considering athletic training, occupational therapy or physical therapy, but her sister’s experience helped crystallize her vision.

Nursing became her career path, and she knew then, “Riley is the place for me.”

Today, Pauley is in a good place physically and mentally, she said. She is in remission but sees her physician every three months and continues physical therapy.

“I am happier than I’ve ever been, honestly. I used to be a big worrier, but now I let that go. Life is too short to worry about other stuff right now,” she said.

“I just love life a whole lot more.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

The note said, in part: "Emily heads our Sunshine Committee, and she truly IS a ray of sunshine. She is always cheerful & happy to face the day, offering assistance to others, and never complaining if she is floated. She treats our patients with such tenderness & kindness, & she has an infectious laugh."

We stopped by the unit to share the kind words with Emily and we captured her reaction on camera.

If you'd like to submit a surprise compliment, please email socialmedia@iuhealth.org

Launi-Rae remains in the NICU due to several medical challenges. Jennifer and her husband say they are glad they are at Riley where their baby has access to all the specialists she needs right now.

The note said: “She is always up looking for opportunities to clean, organize, & take pride in making our unit look nice. She is so caring & compassionate to our patients and families. She truly builds a warm connection to each patient & is an essential member of our care team. Paula recently overheard that one of our young girls was unhappy that half of her hair had been shaved off for surgery, so she instantly crocheted her a hat to make her feel pretty. She literally had it done in about 30 minutes! She also showed tender compassion to a young boy who was scared & sad, & she gave him encouragement when he talked about having to be in a wheelchair. She decorates the unit bulletin board with different themes & promotes staff & patient participation! This month, she created a checkered flag & had staff & patients color race cars with our faces in them!”

Watch the video to see Paula’s reaction!

If you’d like to submit a surprise compliment, please send an email to socialmedia@iuhealth.org

Maverick's parents say they are grateful to Riley for having a team ready to go on a Sunday night to care for their youngest child.

After his surgery, Maverick spent just a few days at Riley to recover. Now, he’s back his normal self.

This weekend, he will be throwing out the first pitch at the Indianapolis Indians game.

During her time in the dialysis clinic, she was all about karaoke. So, she celebrated getting her transplant by grabbing the microphone and singing one of her favorite songs with her child life specialist. The two of them performed "Party in the USA" by Miley Cyrus. The medical team also played this song in the operating room right before Serenity's transplant.

Serenity dreams of becoming a nurse or a singer when she's older.

They are “ride or die” friends. Veteran nurses on the NICU.

They had babies three weeks apart a quarter century ago.

Those babies had playdates together. Went to high school together.

And now those same babies are nurses alongside their moms.

The call to be a nurse at Riley Children’s Health is strong, especially when you’ve grown up hearing about it from someone in your family.

On this Mother’s Day, Stacia Nickell and Susie McSwain – each with more than three decades of nursing on the neonatal intensive care unit – watch with pride as their daughters, Murphy Nickell and Jenna McSwain, follow in their footsteps.

“I love being able to work together when we get the chance,” Susie said, with her daughter sitting by her side. “We may not get the chance to really talk while we’re working, but we ride in together and ride home together, and I get the chance to hear her perspective on things and how her day went. I love seeing her love what I love.”

At that last comment, Jenna wipes away tears. A nurse on the unit for three years, she is about to become a first-time mom herself.

“Blame it on the hormones,” Susie teases her daughter.

But Stacia says that emotional response comes naturally to Jenna, and it helps her connect with her patients and families.

“That comes from watching you, sister,” she says to Susie, who is well-known for asking parents of babies in her care how they met and fell in love. “People will tell her anything.”

“I can’t help it, I love people,” Susie laughs.

“They know you care,” Stacia adds.

FAST FRIENDS

The two older women joined the Riley NICU team within a year of each other in the late ‘80s and later worked together in the old Module 3, which was the surgical module.

“We took care of the sickest babies on the unit,” Stacia said. “We got close through teamwork, and we had kids at the same time. It was great. We are ride or die friends.”

They even vacation together, though never with the girls, Susie laughed.

“There are things they can’t know!”

Their trips, whether to the mountains or the beach, are legendary around the unit because the pair delight in sending photos of their adventures.

“We go on those trips to unwind and not have to be responsible,” Stacia said.

Jenna gets it.

“Stacia allows my mom to be a different person – a different part of her authentic self,” the younger nurse said. “I think having somebody who lets you be that free with yourself ….”

Her voice trails off as Susie wraps her in a hug.

“I get to be Susie when I’m with Stacia,” Susie explains. “I’m not mom, I’m not a wife, I’m not a nurse. I’m just me.”

As many mothers can attest, it’s easy to lose bits and pieces of yourself along the way.

“She pulls that part of me back out,” Susie says of her friend.

“When I get with her, it allows me to get back to my true self, too,” Stacia adds, remembering a time on a hike when she crouched down on a ledge on a mountainside to make it look like she was falling.

“Susie was having a heart attack and yelling at me to get up, and I’m yelling at her to take a picture. It’s a gift we have for each other that we can do that. We look forward to our trips.”

MOM INSPIRES HER

Murphy Nickell loves hearing stories like that. She worked in the NICU as a unit secretary for three years, before joining her mom as a nurse there a year ago.

“Growing up, I watched my mom go through many different phases during her nursing career. From bedside care, to management, shift coordinator, managing the OR and NICU move over to the Simon Family Tower,” Murphy said.

Seeing what she describes as her mom’s courage and selflessness has humbled her, she said, and makes her appreciate her even more.

“I remember growing up and waiting for her to come home, only for my siblings and me to bombard her with our needs and questions,” Murphy said. “Now that I am a nurse, I wonder how she did it for so many years. When I come home from work, I am ready to relax and couldn’t imagine four kids needing me the minute I get home.”

Both Murphy and Jenna say that working alongside their moms, even if they don’t interact during a shift, fills them with pride.

“One of the things I like about working with my mom is that, while we get to know throughout our lives that they’re proud of us for different reasons, it’s fun to be proud of who they are at work and know that’s how we got here,” Jenna said.

At that, Susie reaches out to grab her daughter’s hand, saying, “Now, you’re gonna make me cry.”

That pride goes both ways, she says.

“What really touches me is when a doctor, another nurse or anyone we work with seeks me out to tell me how special Jenna is or what a great nurse she is,” Susie said. “It's like a Happy Mother’s Day every time.”

And it doesn’t stop with Jenna. Susie’s bonus daughter, Heather Dornbusch, is a registered nurse in the cardiovascular intensive care unit at Riley.

“She says she’s a nurse because of me,” Susie says with pride. “That’s what she tells me.”

ALWAYS LEARNING

Apart from the pride that extends from mother to daughter and back again, they learn from one another as well.

Just like Susie and Jenna, when Stacia and Murphy work the same days, they ride in together as well, and it’s time they treasure.

“Sometimes that 20-minute drive is my favorite part of my day,” Murphy said.

Stacia, a shift coordinator, is challenged to think differently when Murphy asks questions like, “why are we doing this” or “why can’t we do that?”

“When I started, we worked in big rooms together where we could see each other, and it was easier to make a connection and compare notes,” Stacia said. “Now they’re in linear hallways (and private rooms), and it’s harder to get information. Looking at it from her perspective instead of my normal 35-year lens is good.”

“It’s never-ending learning with this job,” Susie agrees. “We sometimes get a diagnosis that even after 35 years is new to us. Sometimes Jenna will be here on a day when a baby like that comes in and she will ask the questions and get educated and then she’ll tell me something I never knew. And let’s face it, their brains are so much younger than ours,” she says, triggering another round of laughter from the group.

Jenna says being able to ask her mom questions has helped her learn more than just technical skills or communication skills.

“As new nurses, you get a lot of the ‘how’ when you start, but the ‘why’ comes later,” she said. “Why do we use a certain medication over another, or why do we do certain interventions for babies. I got a little bit of the ‘why’ before my brain was necessarily trying to find it because I had the resources.”

FINDING THEIR FOOTING

Both moms made it a point not to hover when their daughters started working as nurses on the unit. They wanted their girls to grow and stand on their own.

“I wanted her to be her own person,” Susie said.

“I wanted people to say Jenna and Murphy are good nurses,” Stacia agreed. “I wanted them to stand on their own merit, and I think they both have.”

Murphy, who was called away during our interview to care for a patient, later emailed to talk about what her mom means to her and to thank her for raising her to be independent.

“I know that without her I would not be the woman I am today,” she said. “I think it’s very special to be able to work with my mom because she is able to see me grow as a person and a nurse. I love her and hope she knows how much I appreciate all that she has done for me to help me be successful in life.”

Jenna watched and learned from her own mom, not just about nursing as a career, but as a passion.

“I just loved when she would come home and you could tell she loved what she was doing.”

Even on the hard days.

“I wanted to love what I did, too,” Jenna said.

And she does.

“It’s been everything I thought it would be.”

Susie recalls a moment when Jenna told her, “I just want to be as good as you one day.”

“And I said, ‘No, you want to be better, and you will be.’ You’re on your way.”

(Three other mother-daughter nurse teams on the Riley Heart Center were featured on “Today with Hoda & Jenna” last week.)

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

On what Riley Children’s Health Chief Nursing Officer Megan Isley describes as her “favorite day of the year,” dozens of nurses were singled out for their accomplishments Tuesday during Riley’s Nursing Excellence Awards program.

Scheduled to coincide with Nurses Week, this year’s event, complete with glow sticks and door prizes, attracted a full house to the Ruth Lilly Auditorium in the Riley Outpatient Center.

There were cheers and tears from those in the audience as they celebrated all Riley nurses for their hard work over the past year.

The top award – the Margaret Martin Roth Award – went to Stacy Nance, a charge nurse who splits her time between the Hematology/Oncology Infusion Clinic and the Surgery Clinic (assisting the craniofacial team).

Others nominated: Kelsi Croy, PICU; Debbie Lemay, Neurology Clinic; and Liam Roche, Resource.

The award is named for a pioneer in pediatric nursing who joined Dr. Morris Green in 1965 to help establish the first parent care unit in the country at Riley in 1971. Margaret Martin Roth passed away in January 2023 at the age of 102.

Her legacy lives on in Riley’s family-centered care model and in the nurses who are guided by her example still today.

“Stacy represents what every professional nurse should strive to be,” the nomination letter read. “She is professionally engaged, utilizing her clinical expertise to advocate for her patients and team members. She fosters relationships with her patients, their families, her team and many disciplines at Riley. She embraces learning and a spirit of inquiry.”

Additionally, the longtime nurse demonstrates commitment to the principles of family-centered care, patient and family education and discharge preparation, the nomination continued.

“Stacy … cares for her patients and their families from their present medical needs to their needs at home. She spearheaded work with food insecurity to help address a piece of social determinants of health that affect our patients. She looks past (a) medical diagnosis to ensure patients are set up for success … addressing barriers to care and the ability of families to advocate for their children.”

After receiving the award, Nance was still sorting through her emotions while colleagues and family members congratulated her.

“I wasn’t expecting this,” she said, explaining that after 17 years as a nurse for IU Health, the past six at Riley, she understands her purpose better than ever.

“I am laser-focused on patient-centered outcomes and all that encompasses. I like to talk about nurse care and self-care and how we can’t fill others’ cups if we don’t have a full cup ourselves,” she said. “I feel like I’m at a point in my career where my job is to raise others up.”

And she does just that, according to comments from co-workers shared on a video after the announcement.

“You exude so much joy in everything you do, and it shows in your research, your patient care and your advocacy for your team,” said one. “We are so lucky to have you,” said another. “You are an inspiration to all of us.”

Nurse Excellence Award winner: Drue Kluemper, Labor & Delivery.

“Drue truly showed her nursing excellence in the care she provided for my daughter and my family,” said a fellow nurse in her nomination letter. “She didn’t just see a patient; she saw a person. A person at their lowest, going through the most difficult thing they will ever go through. Thank you, Drue, for helping me get through the scariest and hardest night of my life.”

Kluemper, who worked for two years in hematology/oncology at IU Health University Hospital before moving over to the Riley Maternity Tower when it opened in 2021, was tearful after the ceremony, grateful for her team and her patients.

“I truthfully didn’t think I’d be good enough to win this award,” she said. “It’s awesome. Our unit is amazing.” And while her role as a labor and delivery nurse can bring joy and sorrow, “you just need to be there for the patient.”

Also nominated: Mary Ash, ROC Surgery Center; Ashley Cantlebarry, Inpatient Rehab; Sarah Hartman, Dialysis Clinic; Kathleen Head, 5W; Angie Jennings, PICU; Teryn Leuthold, 8W; Brittany Creel, 3W Heart Center; Kelly Marvel, Labor & Delivery; Jessica Murphy, PICU; Dianne Seibold, Riley OR; Tracy Spitzer, Nursing Practice PICU; Ronin St. James, PICU.

Among the other award nominees and winners:

Coach Award winner: Anna-Kay Bailey, OB ICU.

This award recognizes outstanding coaches at Riley Children’s Health and their commitment to the development of new Riley nurses.

"Anna-Kay pushes herself out of her comfort zone to ensure the nurses she coaches obtain valuable learning experiences,” said Mackenzie Edge-Reetz, OB ICU clinical manager in her nomination letter.

“She recognizes coaching as an opportunity not only to share her wealth of knowledge, but also to individually grow as a nurse and leader. Anna-Kay advocates fiercely for her patients and truly demonstrates the IU Health values of compassion and purpose when coaching. She is an excellent role model for nurses new to our unit and a valued member of our team,” Edge-Reetz said.

“I love coaching, and I love helping new nurses learn,” Bailey said as her co-workers gathered around to congratulate her. “It feels really nice to be recognized.”

Also nominated: Kasey Boyle, Emergency Department; Brittany Brown, 3W Heart Center; Elizabeth D’alfonso, PICU; Erin Duncan, 9E; Jack Ehrlich, Emergency Department; Angie Hammond, 3W Heart Center; Ivana Hull, 8W; Katie Lail, CVICU; Anna Lubbers, 9W; Natalie Mills, Emergency Department; Darcie Nation, PICU; Ellie Plata, Mother/Baby; Tawanya Roberts, surgery; Allison Schneider, surgery; Kristi Sowder, Mother/Baby; Molly Rose Trent, Labor & Delivery; Brianne Williams, Inpatient Rehab; Jami Wilson, North Peds/PICU.

Stephanie Pottenger Award winner: Shelby Nation, 3W.

The Heart Center nursing award was presented by Stephanie Pottenger’s sister Amy, along with Ashley Ford, day shift coordinator and interim manager for 3W.

“I was a baby nurse when Stephanie started in 2012 as a PCA,” Ford said.

Pottenger would go on to earn her nursing degree from IUPUI, become a certified pediatric nurse and a nationally certified child passenger safety technician, among other leadership roles.

“Stephanie valued education. She loved her Riley family and was a passionate bedside nurse,” Ford said. “She was a preceptor, charge nurse and instructor for St. Elizabeth School of Nursing. In 2019, she was accepted to IUPUI School of Nursing to pursue a nurse practitioner degree. When I think about a Riley nurse, Stephanie was the epitome of that.”

Amy Pottenger said her sister, who passed away from cancer in 2020, had “a very big heart,” and professional development was important to her. “I’m so grateful this award exists, not only to honor her, but to give this opportunity to somebody else.”

Brittany Gaskins Award winner: Kailey Potts, 9E. The award is given in memory of an interventional radiology nurse to a nurse with less than 18 months’ experience.

Daisy Nurse Leader Award winner: Amy Birchfield, nursing practice. Other nominees: Ashley Ford, 3W cardiac stepdown; Angie Jennings, PICU; and Sara Murff, 8W.

Daisy Team Award winner: Nursing practice team. Also nominated was the 9W team.

Distinguished Nurse Excellence Pinning: Jamie Haddix.

Riley Children’s Foundation Scholarships: Julia Burgess, cardiac stepdown, pursuing pediatric nurse practitioner degree; Jennifer Engleman, pursuing doctorate in nursing practice; Laura Koke, nursing practice, pursuing master’s in nursing leadership; Brittany Peacock, emergency department, bachelor’s in nursing; Sarah Rhoads, Maternity Tower NICU, doctorate in nursing practice; Laura Smith, Simon Family Tower NICU, bachelor’s in nursing; Kailey Potts, 9E, doctorate in nursing practice; Shelby Nation, 3W, pediatric nurse practitioner.

Partner in Care Award winner: Mackenzie Fahey, Quality & Safety. Also nominated: Tammy Allen, 8W; Madeline Baxter, 3W Heart Center; Annie Byrd, Developmental Medicine; Julia Dugan-Ochoa, Labor & Delivery; Naticha English, PICU; William Flores-Cisnero, Infusion Clinic; Bri Havis, 9E; Janet Hill, Hem-Onc Infusion Clinic; Ruth Johnson, PICU; Kevin Marshall, Maternity Tower NICU; Riley Prewitt, 9E; Jaime Redkey, Infection Prevention; Katherine Stroke, 9E; Jada Thomas, Infusion Clinic; Claire Thompson, 9E.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

"Parents are often the first to notice signs or symptoms of mental health or emotional challenges in their kids because parents typically spend more time with their kids than anyone else. They know their rhythms and routines, and sometimes parents notice changes even before their children do," says Zachary Adams, PhD, a licensed clinical psychologist at Riley Children's Health. "Also, kids may feel safest opening up to their parents and caregivers."

It can be difficult for parents to decide to seek emergency care for a mental health concern. Some people don't think emergency rooms treat mental health issues. Others may be hesitant to take their children to hospitals due to financial reasons or because they associate hospitals with serious injuries or other types of illness. Calling 911 may invite law enforcement into the home, which concerns some families.

However, if you think your child is an immediate danger to themselves or to others, it's time to call 911 or go to the nearest emergency room. This includes danger from:

• Thoughts of suicide or self-harming behaviors
• Threats of violence to (or from) others
• Accidental or intentional intoxication or overdose from drugs or alcohol
• Hearing voices or hallucinations
• Confused thinking or speech
• Erratic behavior or agitation

If your child does not seem to be at immediate risk of harm to themselves or others, your primary care physician can screen and assess your child's needs and make the appropriate referrals if needed. The Indiana Family & Support Services Administration also provides a list of local community mental health centers that offer prompt assessments, crisis support and resources.

If you are unsure whether your child's behavior requires emergency care, you can dial 988, the Suicide & Crisis Lifeline. This hotline helps assess your situation and plan the next steps.

While some mental health concerns warrant a call to the pediatrician, Dr. Adams says it's time for emergency care when you see major, unsafe shifts in your child's behavior.

"A mental health crisis is a big departure from what's normal or typical for that child. The threshold for seeking emergency care is generally when there's a concern about keeping everyone – including the child – safe and alive," Dr. Adams says. "This is an extreme concern that makes you worry for your child's safety, and it's not something that can wait for an appointment at your doctor's office."

If you need to take your child to the emergency room, be prepared to speak with the clinical team about your immediate concerns and your child’s mental health history. Hospitals like Riley Hospital for Children have a dedicated team for children experiencing mental health emergencies. Your child will be assessed at the hospital. You will be asked questions about any recent changes in your child's behavior and what may have caused them. Keeping an updated list of your child’s medications handy will also be helpful for the team. Depending on your child's age and comfort level, care providers may ask you and your child questions separately to understand the situation better.

"The emergency care team may be able to diagnose some symptoms by observing your child, but they will also rely on what you and your child tell them," Dr. Adams says. "The team will assess what's going on to determine how serious the risk is. Be prepared to help them by sharing as much insight as you can so they can make the best decisions for your child."

Going to the emergency room doesn't always mean your child will be admitted to the hospital. "The team will assess your child’s level of need along the psychiatric continuum of care whether that be inpatient or outpatient treatment,” says Priyanka Reddy, DO, a child and adolescent psychiatrist at Riley Children’s Health. “They may also prescribe medications or recommend that you follow up with outpatient psychiatric resources or with your primary care physician. This team's job is to ensure your child is safe, then work to understand the situation and devise a plan to support your family going forward.”

Caregivers can support their children after a mental health crisis by following up on recommendations and keeping doctor appointments. Continue to monitor your child and check in routinely on their feelings. Help your children get good sleep and eat healthy foods to support their mind and body. While you may not want to push your child too hard after a crisis, keeping them on track is important.

"Some family members may be reluctant to encourage their child to do any work after a crisis, which might inadvertently contribute to other problems at home or school. Others may push too hard and expect too much, which can minimize the severity of what the child is going through," Dr. Adams says. "Work with your care team to collaborate on a routine for your child. There may still be unresolved issues, and you can ask for ways to help support your child and the rest of the family."

Through regular, open communication with your child and ongoing, responsive medical care, you can support your child to avoid mental health crises in the future. In addition to the 988 hotline, parents can also learn more about pediatric mental health through resources at the Child Mind Institute, American Academy of Pediatrics and American Academy of Child & Adolescent Psychiatry.

If you notice symptoms again, remember to look for immediate safety concerns. This will help you decide whether to head to the emergency room or contact your child's primary care team. If you’re unsure about what to do, contact emergency resources for guidance. Prioritizing your child's mental health needs now can help you and your child manage them in the future.

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When she got the call, this mom’s heart skipped a beat - After more than 300 days at Riley, 11-year-old Edward Sandefur receives his hero heart.

Mom is never far from her son’s side as he waits for a new heart - “We’re all here together fighting and praying for our kids,” says the mother of 10-year-old Edward Sandefur, hospitalized since mid-June.

Marissa Olivarez didn’t understand what was causing the frequent headaches or the tingling and numbness in her left arm.

She’d been to doctors, she’d had tests done, but it wasn’t until she saw the neurology team at Riley Children’s Health last fall that she had a name for what was wrong with her.

Moyamoya disease is a rare, progressive cerebrovascular disorder caused by the progressive narrowing of arteries at the base of the brain. It literally means “puff of smoke” in Japanese, describing the tangled vessels that form to try to compensate for decreased blood supply to the brain.

“She was having what we call mini strokes or TIAs,” explained Dr. Rabia Qaiser, associate professor and researcher with IU School of Medicine and pediatric neurosurgeon at Riley.

TIAs are transient ischemic attacks that occur when blood supply to the brain is briefly interrupted. While TIAs typically last only a few minutes and patients recover quickly, they can be a warning sign that a person is at risk for a full stroke.

For Olivarez, putting a name to her condition was a relief, even if the disease itself was still a mystery.

“I had no idea what Moyamoya was,” said the 19-year-old, who lives in Warsaw with her parents and younger brother. “Dr. Qaiser explained everything and put my mind at ease.”

Not that it wasn’t scary.

“I just knew I had something wrong with my brain.”

The exact cause of Moyamoya is still being studied. There could be a genetic component, Dr. Qaiser said, but it is also sometimes associated with conditions such as Down syndrome and sickle cell disease.

In December, Olivarez checked into Riley to undergo surgery. It is a procedure that Dr. Qaiser has performed many times in which she harvests a blood vessel near the ear and places it on top of the brain.

“It actually puts roots into the brain and makes new blood vessels, and that supplements the blood supply,” the surgeon explained.

Dr. Qaiser’s return to Riley after completing her pediatric neurosurgery fellowship training here in 2015 is due to her interest in the cerebrovascular pediatric population and the opportunity to expand Riley’s reach beyond Indiana.

“That is my passion,” she said in an earlier interview, “to make this a center of excellence for pediatric cerebrovascular diseases, including Moyamoya disease, arteriovenous malformations, aneurysms, stroke or any vascular diseases that affect kids. We want them to come here.”

Even at 19, Olivarez felt like a little girl the night before her surgery.

“It was so scary,” she said. “I could not sleep. That first night, my parents stayed at the Ronald McDonald House, so I had to stay in the hospital by myself. There was so much running through my head, like what if that’s the last time I see my family?”

Riley nurses came to her rescue that night, calming her with coloring books and companionship.

“There are some amazing, amazing nurses at Riley, and doctors, especially Dr. Qaiser. She saved my life. She made me a better person.”

Olivarez, who is also under the care of Riley neurologist Dr. Derryl Miller, had just graduated from high school when she was diagnosed. At the time, she said, she felt like her world was collapsing.

“I felt so alone. I lost all motivation.”

The surgery changed all that. Her attitude shifted as well.

“I know God’s got my back. I already had open-heart surgery as a baby (for a congenital heart defect). I can get through this,” she told herself.

“Now, I’m doing more, I’m working, going to church, hanging out with my friends, exercising. Honestly, it was lifechanging,” she said.

“It opened my eyes to never taking things for granted. Before, I didn’t really see how lucky I was to have a supportive family and close friends. I see that now. Everybody in my life came to bat for me.”

She will continue to be followed by Dr. Qaiser, but for now she is back in the gym and is working full time at a hotel.

“I love going to the gym,” she said. “It’s a long recovery process, both physically and mentally, so every day, I have to push harder and harder. But it’s a second chance for me. It’s made me a better me.”

That zest for life is exactly why Dr. Qaiser does what she does.

“I think Marissa is an amazing person who is very determined and ready to get back to her life. She did it herself,” the surgeon said. “This is the best thing about working with young people.”

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New Riley neurosurgeon found her calling at a young age - Dr. Rabia Qaiser has been interested in the intricacies of the brain since she was barely a teenager. At Riley, she will focus on pediatric cerebrovascular diseases.

Megan Hay was changing the dressing on the area around her son’s Berlin heart when her phone rang.

She didn’t stop to answer it, but then a nurse came running in, picked up Hay’s phone, put it on speaker and said, “Say hello!”

It was Riley Children’s Health pediatric heart transplant coordinator Debra Murphy on the line, and that made Hay’s heart skip a beat.

She knew that Murphy would be the one to let her know when a heart had been found for her son, Edward Sandefur.

As Murphy shared the news with Hay that Riley’s heart team had identified a donor heart for Edward, the South Bend mom collapsed on the floor and began to cry.

“So many emotions,” Hay said, thinking back to that day nearly three weeks ago. “It was the best call ever.”

Within hours, 11-year-old Edward would be in the operating room at Riley, where heart surgeon Dr. Mark Turrentine would perform the transplant.

“Before surgery, I had nerves of course, but I actually felt a lot calmer than I thought I was going to that day,” Hay said.

This was what she and her family had been waiting for, preparing for, praying for over the past several months.

Edward had already been at Riley for more than 300 days. In August, he had the lifesaving Berlin heart connected to his body to ease the pressure on his own weak heart.

Hay has not gone home since Edward was admitted to Riley last June. Edward’s dad, Nick, visits on the weekends, along with other family members when they can.

But now, mom and son are adjusting to life after transplant.

“He’s doing really well,” Hay said last week, after Edward was moved out of the cardiovascular intensive care unit to the stepdown unit.

“He is so much happier. It’s been nice to feel like I can see his little personality coming back.”

Seeing the color return to her son’s cheeks and the sparkle back in his eyes is easier on a mama’s heart, too.

“It was so hard just sitting and waiting and not knowing when that call was coming.”

At the same time, she said, she grieves for the family of the child whose heart Edward received.

“I just want that family to know how extremely grateful I am for their selfless gift of this most precious heart.”

Soon, Edward and his mom will move over to the Ronald McDonald House for about a month while Riley cardiologist Dr. Robert Darragh and other clinicians continue to monitor his health. During that time, he will complete cardiac rehab over at the IU Health Methodist Hospital COLTT center.

Then, it’s off to home, where Edward looks forward to being reunited with his two cats, Oreo and Cheeto, his grandmother and the rest of his family.

Hay, who is making a book filled with pictures from Edward’s stay at Riley, has mixed emotions about leaving.

“We made new family here with all of the nurses, so it will be bittersweet saying goodbye.”

The Riley Children’s Health Cardiology and Heart Surgery program is ranked sixth in the nation by U.S. News & World Report.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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Mom is never far from her son’s side as he waits for a new heart - “We’re all here together fighting and praying for our kids,” says the mother of 10-year-old Edward Sandefur, hospitalized since mid-June.

Dr. Rabia Qaiser, a Riley neurosurgeon, was able to perform multiple surgeries to eventually remove the entire tumor. Now, LeAnn is undergoing chemotherapy.

Despite her difficult journey, LeAnn keeps the nurses on her unit laughing. You might spot her stomping down the hall in her light up rain boots or blowing bubbles at the animal illustrations around the nurses station.

It was just before her 60^th birthday when Nancy Kehlenbrink felt the lump in her breast.

“A great birthday present,” she says ruefully.

And then she laughs.

She laughs a lot during a 30-minute conversation. And despite what you might think, it’s a joyful laugh.

The beloved Riley Children’s Health team member is facing cancer with the same kind of strength she has seen in countless Riley kids over the years.

She may not have chosen this path, but she has embraced it for all it is teaching her.

“I may have cancer, but cancer does not have me, and it never will.”

She delivers that line with such force you don’t question it.

The longtime Echo tech at Riley is not just putting on a brave face. She is feeling brave because she has walked alongside courageous little humans for decades.

“I have spent almost 32 years watching the most amazing people face the most dire of health circumstances,” she said. “I have learned so much by watching how they heal, how they fight and how they live.”

Those were the words she shared when she announced her diagnosis of ductal invasive breast cancer in late March. Since then, she has continued to bless those around her with uplifting messages.

That is her way. Parents and patients alike have developed a deep affection for the woman they call “Fancy Nancy” for her good cheer, attentive care and unwavering faith.

“I have an amazing God that has a plan for me, and I welcome it,” Kehlenbrink said. “I’ve been very peaceful about this. I feel like it’s a journey I’m supposed to experience.”

She has finished the second of six rounds of chemotherapy at IU Health Simon Cancer Center. Her hair is falling out, and her energy sags, but she finds something good in every day.

“Today, I felt like Fancy Nancy again, so I did things that make me happy.”

She fed the birds on the four-acre property she shares with her mother. She made scrambled eggs. She took a short walk, and she played a little ball with her dog, Pollyanna.

“She’s my best friend,” Kehlenbrink says as the golden retriever sidles up next to her. “She can’t understand why I can’t play ball as much, but she has not left my side.”

When she doesn’t feel well, Kehlenbrink takes the advice of her young patients and rests. Sometimes she watches a little “Bluey,” a familiar soundtrack at the hospital. “It makes me happy.”

She focuses on the simple things in life, a lesson she learned from the kids. She gets along so well with her patients, friends say, because she is a kid at heart.

She works when she can, but she fears those days are fading for the time being. Last week, her colleagues in cardiology, including cardiac sonographer team lead Jennifer Johnson, gathered to do some design work in her hair. One of them shaved the outline of a heart.

And that says it all.

Kehlenbrink’s heart is bigger than most, so it makes sense that her career is focused on taking pictures of the heart. An echocardiogram uses high-pitched sound waves to look at the heart and nearby blood vessels.

During those scans, she takes the time to connect with her patients and calm their parents.

“Nancy has a kind and gentle spirit that calms our patients who are a little apprehensive,” Johnson said. “She gives so much of herself to her patients and her co-workers.”

Always quick with a smile, a word of encouragement or a hug for others, she is receiving that back ten-fold now.

“The couple days I was there last week I got to see kids I needed to see,” she said. “They all had messages for me. They helped me feel like nothing could stop me.”

And it is because of those kids that she is able to face this challenge with grace.

“I have watched them and learned from them. I’ve coached them and been their cheerleader, not fully understanding what they were going through, but now I do,” she said.

“They have taught me about strength, courage, hope, faith, love, kindness and grace. I have paid attention. It’s now my turn to put all those gifts to use in my healing.”

One of her goals through this process is to find a way to let kids teach adults how to heal “because kids heal with their hearts and their souls and leave their heads out of it,” she said.

Adults have it backwards, she thinks.

“For years, I’ve watched parents agonize because they know everything – the doctors tell them everything. They don’t tell the kids everything and so they don’t agonize. You see them not feel good and then you see them feel good. They just do it better,” she said.

For that reason, she asked her own doctors not to tell her about the side effects she might experience or how each drug she must take will fight the cancer. She trusts them to do what is best, and she leaves room in her head and her heart for the good stuff.

“We all did it better as kids because we had not put that layer on top of us that starts muddying up how we view the world. So, I just took myself back and wiped off those top layers that I’ve been carrying around all these years, and I’m going to stay here. It really does work.”

The support she has received from her family, friends, patients, parents and co-workers has been overwhelming, she said.

“I truly feel like I am the most blessed person in the world. It’s almost embarrassing how wonderful people are.”

For a moment, Kehlenbrink reflects on another time in her life. A time when she was younger and full of dreams.

“I couldn’t understand when I was younger why I couldn’t have kids, but then I realized that God gave me all the children at Riley to be my kids. I love every single one of them,” she said.

“I couldn’t have planned this life any better. It’s beautiful.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Just like Clark Kent in his phone booth, four seemingly ordinary men ducked into a bathroom off the lobby of Simon Family Tower on Friday morning, only to emerge as superheroes.

Spiderman, Ironman, Thor and Hulk were quite the sight as they entered an elevator bound for the roof at Riley Hospital for Children.

Their mission? To leap off the tall building (with ropes attached), dangle in the air and rappel from floor to floor, waving to Riley patients.

Noll Pfenniger, 3, couldn’t believe his eyes when the Marvel superheroes who previously lived only in books and movies, were hanging right outside the playroom of the Heart Center at Riley.

He giggled and squealed as he watched the costumed characters cavort outside the window.

“Look at him! He’s very silly,” the toddler said to his mom, Lydia, who enjoyed the visit nearly as much as her son did.

“This was an unexpected surprise today,” she said. “Now he’ll have something to brag about to his brothers.”

Friday’s superhero appearance coincided with National Superhero Day and was made possible by Valcourt American National Skyline Indiana.

The “hangers,” as they call themselves, included four local window washers, who delight in making kids smile.

Aaron Myers, Larry Green, DaVondre Jackson and Ryan Green said they look forward to the adventure every year. Larry Green even grew out his beard over the past few months to take on the part of Thor.

“We do it for the kids,” Ryan Green said, adding that all of the men have children of their own. “Everyone gets excited. Last year was our first year going out after COVID, so it was the first time the community areas were open for all the kids to get together. That was really special for us. We loved it.”

Jackson, who had to make a last-minute switch to Ironman from Spiderman because he couldn’t see out of Spidey’s mask, was on his first superhero mission down the side of Riley Hospital, but it likely won’t be his last.

“I think it’s a wonderful thing to do,” he said. “It fills my heart with joy. I love kids.”

Four-year-old Lily Beach had a little help from her dad to get up close and personal with Spiderman, her favorite superhero. She watched in wonder and offered a shy wave.

“She watches Spidey every day,” her dad said.

While bigger kids found positions near the playroom windows on each patient floor, nurses and parents held tiny ones as well – babies from 2 weeks to several months old, some who slept through the party.

In one room, Riley nurses (everyday superheroes) gathered to take pictures themselves, grateful for a chance to unwind even for a few minutes.

Kaleigh Biszantz, a nurse on 9 East, enjoyed watching the kids’ faces light up as the characters bopped around outside their window.

“For some of them, it was the first time out of their room, so it really encouraged them to get up and move,” she said.

Friday’s surprise guests may have stolen the show with their high-flying antics, but it is the people who work at Riley every day who are the real heroes, many parents say.

“I’m very appreciative of what Riley does to try to make it fun while we’re here,” Lydia Pfenniger said, as she and her son waved goodbye to the characters. “Hopefully, this is what he’ll remember.”

Photos by Mike Dickbernd and Maureen Gilmer

As the minister read the 23^rd Psalm, those who knew and loved Donna McGaughey couldn’t help but glance at the photos on display at the funeral home.

“The Lord is my shepherd; I shall not want. He maketh me to lie down in green pastures. He leadeth me beside the still waters. He restoreth my soul. He leadeth me in the paths of righteousness for his name’s sake.”

Nearby were photos of McGaughey with her own flock – her family, of course, but also the sheep and lambs that gave her so much comfort and joy over several decades.

Babies were a big part of her life. She helped usher in countless newborns over her 38-year career as a labor and delivery nurse at IU Health Methodist Hospital and Riley Hospital for Children.

McGaughey, who had two sons, Matthew and Michael, and three grandchildren she adored, as well as many nieces and nephews, passed away April 13 at her Greenfield home. She had just celebrated her 61^st birthday.

Last week, she was remembered as a kind and faithful nurse who enjoyed building relationships with her patients.

Rita Carithers, a nurse for 30-plus years, worked weekend nights with McGaughey for 24 of those years. She remembers her friend and colleague as a hard worker, encouraging and a good listener.

“I think a lot of patients looked up to Donna as kind of like a mother figure. She gave them comfort,” Carithers said.

McGaughey, who had recently undergone back surgery, kept a stiff upper lip when it came to her own pain, whether from body aches, surgeries or being kicked by one of her sheep.

“She never complained. She worked in her barn a lot, and she would come to work with all these bruises because she would get kicked,” Carithers recalled.

Her passion for sheep began when her boys were in 4-H, but it grew over the years, and she was a regular on the fair circuit and sheep shows.

“She was dedicated to her boys and those sheep,” agreed fellow nurse Sandy Humphrey, who worked with McGaughey for 28 years.

She recalled hearing stories of McGaughey taking little lambs into her home at night if they needed to be warm.

Nurse Sara Vawter, who worked with McGaughey for nearly 25 years, heard those same stories.

“When it was lamb season, she almost always had at least one baby in her kitchen she was bottle feeding. So, she would go home from work and be a nurse, too,” Vawter said.

Just like she calmed her sheep, she was calming to her patients, Humphrey and Vawter agreed.

“She had a very calm, quiet, comforting spirit about her,” Vawter said.

“She was just a kind person,” Humphrey said. “I never heard her raise her voice. She was compassionate, efficient, and she was very good at picking up different tasks on the unit.”

Kelly Marvel, manager of clinical operations for Riley’s labor and delivery unit, said McGaughey sat at the top of the seniority list, and her experience will be missed.

“To say she was loyal to our team, patients and organization is an understatement,” Marvel said in a message to team members last week.

“She exemplified strength, hard work and passion for what she was doing. The number of babies she had a hand in delivering and mothers she supported is probably in the thousands.”

McGaughey was easy to talk to and “a joy to work with,” Marvel said. “She loved her two boys and found joy in the farm they put a lot of work into.”

That was McGaughey, friends said. Whatever she did, she did 100 percent.

In fact, every vacation she took had something to do with family or sheep, they said.

“She never took a beach vacation. She was always going to a sheep show or a fair somewhere,” Vawter said.

Down-to-earth, hard-working and a true friend. That was McGaughey.

Carithers and McGaughey would park near each other before every weekend night shift and walk in together, talking about their week. After work, they would walk back out to their cars together.

“And then I’d call her if I’d start falling asleep,” Carithers said, “and we’d talk until I got home. And now she’s not here. I can’t call her. I miss her.”

A Nurses Honor Guard, featuring two nurses in starched white uniforms and caps, paid tribute to McGaughey and her many years of service during the funeral.

“It was beautiful,” Humphrey said. “They read the Florence Nightingale pledge and had a table set up with Donna’s picture and stethoscope.”

This poem, written by Duane Jaeger and presented at nurses’ funerals by request, was also shared:

She Was There

When a calming, quiet presence was all that was needed, she was there.
In the excitement and miracle of birth or in the mystery and loss of life, she was there.
When a silent glance could uplift a patient, family member or friend, she was there.
At those times when the unexplainable needed to be explained, she was there.
When the situation demanded a swift foot and sharp mind, she was there.
When a gentle touch, a firm push, or an encouraging word was needed, she was there.
In choosing the best one from a family’s “Thank You” box of chocolates, she was there.
To witness humanity — its beauty, in good times and bad, without judgment, she was there.
To embrace the woes of the world, willingly, and offer hope, she was there.
And now that it is time to be at the Greater One’s side, she is there.

This weekend, he will be throwing out the first pitch at the Indianapolis Indians game!

Kylie Reid says she sometimes feels like a misfit. Her body betrays her, and her mind is always on overdrive.

The 18-year-old suffered trauma as a preschooler when her world turned upside down. Her father was paralyzed in an accident and required months of treatment and rehab. The family’s home was remodeled to accommodate his needs, she had to live with another family for a time, and eventually her parents divorced.

She has been diagnosed with fibromyalgia, a chronic disorder that causes fatigue, pain and tenderness throughout the body. She also suffers from anxiety, depression and sensory processing differences.

The senior at Franklin Central High School was referred to the pain clinic at Riley Children’s Health last year, followed by an introduction to occupational therapy with Riley OT Mary Hart MacLeod at Riley’s East Washington Street pediatric office.

It has been seven months since she began seeing MacLeod, and the difference is remarkable, she said.

PROCESSING PAIN

“We work a lot on the sensory sides of everything and accommodations and figuring out what actually works with my body,” the teen said.

Her parents, R.D. Reid and Jill Howell, sit in on her sessions in a small room where the overhead lights have been dimmed.

Kylie is holding onto a purple ribbon that goes with her everywhere while also hugging a bouncy peanut-shaped ball that she finds comfortable, relieving some of her body aches. The pain started years ago in her legs and feet, then slowly creeped up through her hips and into her elbows and back.

“The biggest thing was it also affected my quality of sleep,” she said. “I've still, to this day, never woken up and felt refreshed from sleep, just because my body is on alert all the time. In OT, we try to get me to be able to relax more. It’s a lot of mind-body work.”

Kylie explains that she’s always been hyper-aware of things, noises and people around her, which led to what she describes as feelings being “stuck” in her body.

“I can highly intellectualize my feelings,” she says. “I know exactly what I’m feeling, why I’m feeling it, when I’m feeling it, but I couldn’t actually ‘feel’ it. So, the feelings would get stuck.”

Therapy is helping her understand what’s going on in her brain and body.

“At first, everything was really disorganized,” MacLeod said. “We had to weed through it and organize it to help her nervous system organize it more. These are the things that are happening in your nervous system, so what are the things we can do to support it?”

SPOON THEORY

They tried spoon theory, basically a metaphor for the amount of physical and/or mental energy a person has available for daily activities and tasks and how it can be limited.

For example, on a low-pain day, someone might need one spoon to scramble eggs for breakfast. On a high-pain day, that same task might use up to three or four spoons. The inconsistency can make it hard to prioritize tasks.

Kylie also uses an app on her phone that helps her track her habits and mood throughout the day, in addition to recording her sleep and events of the day. She is also encouraged to identify three good things each day. Doing so can help increase feelings of joy, contentment and satisfaction, MacLeod said.

On most Thursdays, one of those “good things” is “matching socks with Mary,” Kylie said.

MacLeod and her patient have five pairs of matching socks, and each week they try to match the socks they wear on therapy day simply by guessing. Sometimes Kylie wears two different socks just to hedge her bets.

“Usually when I do that, I get one of them right.”

Today, they don’t match, but they always remember to wear one of those five pairs.

STEALING HER JOY

Before she began meeting with MacLeod, Kylie said she felt “wrong” a lot. “I was just really angry at my body. I’m like, why are you having pain? I just want to walk around my house.”

That nagging pain stole joy from her life, she said.

“We went to a lot of different doctors trying to find out what was wrong,” Kylie’s mom said. “And everyone was like, she’s fine.”

But as those layers of trauma grew, so did her pain.

“It’s restricted more and more just my ability to have joy,” Kylie said. “I think a lot of the pain stems from just being tense a lot.”

MacLeod explains that she and Kylie did a lot of work in their early sessions to find out the best environment and space for the teen to feel safe and comfortable in.

First, she prefers rooms that aren’t super bright. And because she has what she describes as “hyper mobile joints,” she likes the support that the peanut ball gives her.

“I felt safer when I was compressing things, like compressing my hands or my knees or my feet. And slowly I was able to feel safer,” Kylie said.

“I think when she started, she really felt very unsafe within herself and the world at large,” her mom said. “She felt like she didn't fit in. She felt like a misfit. This has helped her to feel less weird.”

SENSORY OVERLOAD

MacLeod has done a good job of including the parents in the process, Howell added.

“That has been really beneficial for us. We’ve been a part of traditional counseling appointments with Kylie in the past. This is different though because we are watching and Mary is modeling how to respond to Kylie’s sensory overload, which has helped teach us how to respond.”

Kylie said being able to process things in front of her parents improved their ability to understand what she was thinking and feeling.

“I just thought I was oversensitive and overreacted to things,” Kylie said. “I’ve had sensory issues since I was little, but they’ve definitely amped up.”

She accommodated those feelings, though, figuring she was just supposed to feel that way.

And now?

“I have never learned so much about what I was feeling,” she said, describing how the simple act of being touched or brushed up against in a hallway could trigger anger and/or pain.

“It was so overwhelming. There was so much going on all the time – in my head, in my body, around me. My body has never been in a relaxed state, and since I started coming here, I've been more relaxed than I've ever been in my life.”

That’s saying a lot, considering that she was skeptical from the beginning because she had already seen multiple therapists.

“This has made the most impact,” her mom said.

Through therapy, Kylie said, she has learned more about respecting her body and what it is telling her.

She looks forward to her weekly appointments, not just for the comfort she finds in them, but for the tips she learns to apply in stressful situations throughout the week.

“Knowing that I can connect and feel safe here will help me in the future.”

OT IS ROOTED IN MENTAL HEALTH

This might not look like a traditional occupational therapy session, and that’s one of the reasons that MacLeod thought Kylie might be a good person to share her experience.

“Her journey with OT probably looks different than a more medical-model journey that is often seen with OT. It's actually closer to where the origins of occupational therapy come from,” the therapist explained. “OT is rooted in mental health.”

While the concept of occupational therapy dates back to the late 1800s, it grew around the time of the first World War, MacLeod said.

That’s when doctors started seeing veterans coming back with trauma and physical limitations suffered in the war.

“So really, what Kylie and I do together is far closer to a really pure form of OT, as opposed to a lot of what you normally hear about in the medical model,” MacLeod said. “As a profession, we kind of got absorbed by physical therapy and speech therapy and respiratory therapy. And really, what we do, and the lens that we look through, is much, much different, and has diverse applications in a lot of different areas.”

Kylie jumps in to put her own spin on the therapy.

“Honestly, like with everybody, it's kind of just figuring out their senses and how their senses work best for them. And not even just people with sensory needs, but kids in general.”

Everybody's nervous system works differently because of how they're wired, MacLeod explained, but also due to how their experiences have shaped their life.

“And so, we take that and look at it through different lenses to figure out how we can use occupation to help you feel restored and safe. But then also, what adaptations can we do to help you be able to engage in your chosen occupations?”

ADAPTING TO COLLEGE LIFE

As she nears graduation, Kylie is set to begin college at IUPUI, living in a single dorm room. She is working with MacLeod to identify obstacles in her new living situation, like lighting, ventilation and social situations, and to come up with strategies to address them.

Since meeting MacLeod, Kylie said, being present in the moment has become easier, and learning to see things through other people’s perspectives is helpful, though she admits to needing more work in that area.

“I used to be a lot more irritable and on edge. I was always in different stages of fight, flight, freeze. I was just rotating through them with different situations. There was not a learned state of rest.”

Occupational therapy works in several different domains, MacLeod explained, including a processing domain, which is how you move through planning, sequencing and organizing thoughts.

There’s also a motor domain – how you move your body; a sensory domain; and a social domain.

Kylie’s therapy has touched on all of these areas.

“When you live in a traumatic state, you see a lot of things in black and white,” the teen said. “There’s not really room for anything other than … this is good or it’s bad.

“I’m still not the best at seeing it as not just good or bad. … But seeing other people’s perspective and trying not to live inside my own head has helped transform a lot of my relationships.”

Learning to “embrace the calm” has been huge, she said.

Asked what brings her joy today, she answered: cats, horses and her boyfriend, not necessarily in that order.

“My boyfriend brings out a lot of my inner child. He’s really fun to play games with or blow bubbles with. I feel really safe around him. Being around ‘my people’ is better for me.”

In this case, occupational therapy is all about finding that joy, MacLeod said.

“It’s about learning how to harness the power of connection and interaction to support someone. And It’s about how you can authentically and joyfully find what you like on a daily basis and actually do it.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

As a child life specialist on 9 West at Riley Hospital for Children, Maddie Rodriguez sees what she calls the “invisible scars” of pediatric transplant patients.

Kids are often hospitalized for months while they wait for a transplant, then recover from a transplant, or suffer transplant-related complications.

It’s her mission, she said, to help patients and families cope with the fierce emotions and the hardships that come with receiving an organ transplant.

To recognize Pediatric Transplant Week and honor the lifesaving gift of organ donation, Rodriguez wanted to do something visible, something interactive, something that kids and families can see whenever they come through the unit.

So, with support from Indiana Donor Network and Donate Life Indiana, she helped design and develop the Donate Life Wall on 9 West, where patients can drop in colored beads to signify their transplant.

On Monday, three transplant patients and their parents were on hand to drop in the first beads – Serenity Boyd (kidney), Beckett Culp (liver) and Emily Shea (kidney).

Emily, a junior at Cathedral High School, told the crowd gathered for the presentation that she received “unimaginable support” from the 9 West crew during her time at Riley.

“All of the nurses helped me during the hard days and the uncomfortable procedures, and Maddie visited me throughout my stay,” she said, as her parents, Patrick and Chris Shea, stood next to her.

“I feel so lucky, not only because of the support I received on 9 West but because the kidney I received transformed my life.”

Her surgeon, Dr. William Goggins, said he nearly walked right past the teen Monday because she looked so healthy, less than five months after her transplant.

She won’t be able to participate in ski club anymore, but soccer is still an option, Dr. Goggins told her.

While the diagnosis of kidney failure turned their world upside down, Emily’s mom said they knew they were in good hands at Riley from the beginning.

“We’re so thankful that we live in Indianapolis and that we have access to Riley with its phenomenal care,” Chris Shea said. “The nursing staff on 9 West was outstanding. Our daughter received a beautiful kidney from a generous donor, and we will forever be grateful to them and their family for this gift of life.”

Transplant surgeon Dr. Richard Mangus echoed that praise for the nurses and the team on 9 West.

“This has given us a home for our (transplant) kids,” he said. “They know where they’re going and what to expect, and they know the nurses. Some kids really are here months and months, and I appreciate those nurses who build those relationships. I appreciate you giving us a chance to bring these kids in from around the country, offer them organ donation, and help us carry it out and save their lives.”

It takes an entire team to care for and support this special group of patients and their families, Rodriguez said, including nurses, child life specialists, physical and occupational therapy, physicians and others. Other units are involved as well – PICU, stem cell, dialysis, 9 East and the operating room staff.

“Our teams are so close up here, and I wanted to get all of our nurses involved because they just love on these kids so much,” Rodriguez said. “It is an honor to have the opportunity to work with these patients and their families. Working on this project has been an absolute joy, and it would not be possible without the generous funding of Indiana Donor Network and Donate Life Indiana.”

Kellie Tremain, president and CEO of Indiana Donor Network, returned the praise, calling Riley an “incredible partner.”

“We are so grateful to Riley for their partnership and the initiative to shine a light on the miracle of donation,” she said. “We encourage all Hoosiers to sign up to become organ, tissue and eye donors. It truly does make a difference in the lives of others.”

To learn more about becoming a donor, click here.

Jordan Stephan cared for Bellamy Hayes during her stay in the NICU. Bellamy’s mom, Meghan, says she really noticed the way Jordan went above and beyond during her interactions with their family.

“She’s been our rock since we’ve been here. She loves and cares for Bella like she’s her own baby. Not only does she make sure our girls okay but is also always checking up on mom and dad.”

If you’d like to submit a compliment for a Riley team member, please send it to socialmedia@iuhealth.org

There was a lot of pomp and circumstance on the fourth floor of Riley Hospital for Children last week, which was appropriate, given the “graduation” of a tiny tot who spent five months in the hospital.

Surrounded by his beaming (and tearful) parents, Nicholas Nedza gazed quizzically at them and all of the team members who gathered to send the young family home after 147 days in the NICU.

Wearing a graduation cap crafted by nurse Courtney Hancock and a tiny onesie emblazoned with the words “And so the adventure begins,” 5-month-old Nicholas was ready to see the outside world for the very first time in his young life.

“Welcome to the chaos,” Liz Nedza laughed as she and husband Kory absorbed last-minute instructions from nurses and packed up their son’s hospital room.

“He’s a popular guy today,” she said, noting the line of people in the hallway ready to sing goodbye to Nicholas. “Considering how this all started, none of us thought …”

Her voice is swallowed up by the hoopla surrounding Nicholas’ farewell parade.

How it started was with Liz Nedza being admitted to Riley’s Maternity Tower with dangerously high blood pressure last November. Nicholas was delivered there at just 26 weeks, weighing 1 pound, 8 ounces.

The C-section saved Nedza’s life, but it meant a long, uphill battle for little Nicholas, who suffered many health problems common in premature infants, including NEC (necrotizing enterocolitis), respiratory issues and feeding challenges.

But on discharge day, he was up to 8 pounds, 10 ounces and was going home on nothing more than a G-tube for feedings.

Alongside him since early January has been one of his primary nurses, Anna Schmidt, who was delighted to see Nicholas being discharged last Wednesday, but also a little sad to be saying goodbye. In fact, she said, the entire family has been “a light in the Riley NICU.”

“Being a part of seeing him grow has been such a joy,” she said. “Taking care of Nicholas and getting to know Liz and Kory was one of the most impactful experiences of my nursing career. I learned so much from my time with him about the importance of advocating for patients and partnering with families to educate them to advocate for themselves and their children.”

Their “faithful presence and support” for their son helped ensure that he received the best possible care because they worked closely with his team every day, Schmidt said.

“Liz was such a strong presence of communication, and her voice was welcomed by the medical team. It can sometimes be difficult as a bedside nurse to believe that our voice matters or has the power to change the way that care is being delivered,” Schmidt said. “The Nedzas had such a passion to see our team bring all of our expertise together to see Nicholas do as well as he could.”

That collaboration was key, of course, but the love Nicholas’ care team showed him didn’t go unnoticed by Liz and Kory.

“This is also why Nicholas is doing so well,” Liz said, referring to the crowd of people in their son’s room and those waiting in the hall to see him off.

“He has a team of people who check on him, even when they don’t have him that day or they’re not working,” she said, adding, “We love Anna so much, and Nicholas loves her. She knows all about him and what he needs, and she advocates for him. It’s so great to have that continuity of care.”

Abbey Benjamin, a nurse practitioner in the neonatal unit, is one of those people who has come to see Nicholas off.

“It’s your time to shine, bro,” she says to her little patient. “Are you ready to break free?”

Watching the interaction, Liz quipped, “He’s breaking hearts left and right.”

That includes music therapist Kalin Hagedorn, occupational therapist Brittany McFarland and other team members who have connected with the Nedza family over the past several months and gathered to say goodbye.

The positive vibes in the room have rubbed off on Nicholas, who patiently tolerates one last temperature check, diaper change and clothing swap before the wagons are loaded and the family heads out to cheers, applause and final hugs.

When he gets home, his stroller will be waiting for him, Liz said, and both parents were eager to take him for his first walk outside on a beautiful day.

“We are excited,” she said. “We are terrified, but mostly excited.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

“Sweet boy Nicholas” will grab your heart - Born at 26 weeks, NICU baby is doing all the hard work it takes to go home, with help from a team of therapists and other specialists.

Collin Cheramie took his first ride in a helicopter recently, and while he won’t remember it, his parents surely will.

The 18-month-old was flown to Indianapolis from Bloomington by IU Health LifeLine after becoming seriously ill with pneumonia.

“It was scary. It happened so fast,” said his mom, Joy Cheramie, who spent several days with her son at Riley Hospital for Children. She and her husband, Joshua, live in Freedom, Indiana, along with Collin and his 7-year-old brother.

You wouldn’t know anything was wrong with Collin, a happy, social little guy who charms the nurses and visitors with his wide grin and joyful chatter.

But he’d already been at Riley for a week by then, long enough for doctors, nurses and respiratory therapists to work their magic and get him breathing well again.

“He has bounced back like a boss baby,” his mom said.

Collin was diagnosed with Down syndrome in utero, news that shook Cheramie at the time.

But once she had time to process the news, she was ready to embrace the joy that only her boy can bring.

After he was born at IU Health Bloomington Hospital in 2021, Collin was in the NICU for three weeks and required oxygen for three months when he went home.

Because of that, colds and viruses can be a little tricky. So when her son’s mild cold symptoms on a weekend in late March took a turn for the worse and he was having trouble breathing, Cheramie rushed him to his Riley pediatrician, Dr. Jason Simmonds, in Ellettsville, Indiana.

Dr. Simmonds arranged for him to be transferred via ambulance to Bloomington before being airlifted to Indianapolis, where he recovered after a week of treatment.

Collin is home now and back in daycare, so his mom was able to return to her job helping people with disabilities.

“He is doing awesome! There are no words to say how grateful we are to Riley.”

Last month’s deadly school shooting in Nashville, Tenn., followed by Monday’s mass shooting in Louisville, Ky., reawakened unsettling feelings of fear, grief and anger in parents.

How can they talk to their kids about these terrifying events?

No matter how hard we might try to protect our children from such news, the reality is they are likely to hear about it – at school, on the bus, online.

For that matter, kids who attend school outside the home already practice for the unthinkable during lockdown drills.

That is reason enough for parents to have age-appropriate conversations with their kids about these traumatic events, according to Dr. Gabriela Rodriguez, assistant professor of clinical psychiatry at the IU School of Medicine and director of the ADHD and Disruptive Disorders Clinic at Riley Children’s Health.

How can parents help kids process these events?

“What I say to parents in my clinic is, start the conversation,” Dr. Rodriguez said. “A lot of kids will be aware these things are happening but may not know how to bring it up. I think it’s important for parents to take that step and let kids know that they can ask any questions.”

When is it appropriate to start that dialogue?

“We never want to scare kids for no reason. But if a child is going to school, they’re likely to know something about this because there are likely to be drills,” she said. “As soon as they start to have that type of exposure, I think it’s important for parents to start the conversation. It’s also OK to start by saying, ‘There have been some things going on in the news. Is there anything you are worried about, anything we should talk about together?’ Follow your child’s lead and respond to whatever their concerns are. We want to open the conversation, but we don’t want to push them if they don’t want to talk. Let them know we’re there and we are ready to talk when they are ready.”

What signs should a parent look for to know if their child is anxious?

“Behavior is communication. Keep an eye out for changes,” she said. “You might not think it’s related if a child is acting out a little, but often it is. Kids aren’t always going to show us the emotions we expect. So any sort of change in behavior we want to be sure to address. It won’t necessarily look the way it would in an adult. They might show some signs of anxiety or fear, they might be worried that it might happen at their school or another school. Or they might be more irritable or angry, they might have changes in their sleep or their appetite, less interest in their usual activities. Often in kids, anxiety and fear show up as physical complaints – stomach aches or headaches. We want to look for a broad change in behavior overall and pay attention to that if it sticks around … over several days or weeks.”

How can parents help their kids feel safe?

“This is tough because anytime we’re talking about kids experiencing any sort of worry or anxiety, usually the conversation is around parents reminding kids what they’re doing to be safe,” Dr. Rodriguez said, using the recent tornadoes in Indiana as an example.

“Whether that means keeping an eye on the news, going to a safe location, having food and water – it’s a little easier to have the conversation. It’s tougher in this scenario because there are things happening in schools to promote safety like drills, but it’s challenging that as a society we’re not necessarily doing much to make a change, so that’s a really difficult conversation.”

But it starts with listening, she said. To get the conversation started, a parent might say, “I’ve noticed you’re having a harder time sleeping the past few nights,” and see what their child says. She encourages parents to model good coping skills as well and to acknowledge their own emotions.

When should parents seek medical advice for their kids?

If it’s a change in sleep habits or increased worry, and it persists for a couple of weeks, your child’s pediatrician can talk you through coping strategies. If it’s a marked change, if there is any safety concern, or your child is starting to engage in self-harm, speak to your pediatrician immediately, Dr. Rodriguez said, and get a referral to a mental health professional.

PARENT AND PEDIATRICIAN

Dr. Sarah Bosslet is a Riley Children’s Health pediatrician and the mother of four children. Her oldest two – twins – were in first grade a decade ago when the Sandy Hook Elementary School shootings in Newtown, Conn., took place. Twenty first-graders were among those murdered that day.

Her kids didn’t go to that school or even live in that state, but it still shakes her to this day.

“I went out of my way to not expose them to any of it as much as I could,” Dr. Bosslet recalled. “I was especially cautious not to have radio or TV on so they wouldn’t overhear things, but I did watch them and nudge, asking if they heard anything at school, because I wanted to be ready if they asked about it.”

Ten years later, school shootings have become more and more frequent around the country, each time tearing at the sense of security parents feel when sending their kids to school.

“Personally, I’m still in a place of complete denial that my kids have to be exposed to this,” Dr. Bosslet said. “I get so angry that it’s feeling so much more ubiquitous now. I have to check my own emotions about it all and just speak to them more matter-of-factly.”

The fact is, gun violence is now the leading cause of death for U.S. children under the age of 18, according to the American Academy of Pediatrics.

TALKING WITH TEENS

Dr. Bosslet’s twins are teenagers now, so she and her husband, Dr. Gabriel Bosslet, can talk more openly about gun violence, but they have younger kids as well.

“With a teenager, it’s a different conversation. They know I’m pretty vocal about it ... in advocating and speaking up about how important it is to keep our children safe from gun violence,” she said. “That’s one way I feel some control over something that feels very out of control.”

With their youngest, a second-grader, she makes a point to ask questions if she finds out there has been a lockdown drill at school.

“I talk to him about why they’re doing that, what does that mean,” she said. “I don’t want to feed him information that he doesn’t need right now, but I do want to make sure he knows he can talk to me about it and that he understands it.”

She and her husband also keep a watchful eye on what media their children consume.

The American Academy of Pediatrics offers an interactive tool on its healthychildren.org website that allows families to create a media use plan for individuals in the family – from toddlers to teens.

WATCH AND LISTEN

Like Dr. Rodriguez, Dr. Bosslet said you can learn a lot about how your child is feeling by paying attention to behaviors they might exhibit.

“That’s how kids show stress,” she said. “If they’re not sleeping well, if they’re waking up or having nightmares, if they are more irritable and agitated, those are usually early signs. Some kids will eat less, and some kids will eat more when they feel stress,” the pediatrician said.

“A lot of kids will complain about upset stomachs. These things will happen to almost every kid at some point, but if it becomes a recurrent pattern and if it is getting in the way of them functioning, those are signs they probably need to check in with their pediatrician.”

Dr. Bosslet begins any such consultation by talking to parents about their own adult response to trauma and how they calm themselves. Sometimes that can mean deep breathing (for younger kids, blowing bubbles or a pinwheel can help), taking a walk, or creative activities like drawing.

The goal is to reassure kids, help them feel safe and let them know that these anxious feelings won’t last forever.

For those kids who aren’t improving, or if it’s a situation that the parents and pediatrician sense is more acute, a referral to therapy might be appropriate.

Dr. Bosslet has one more tip for parents of middle-schoolers and teens.

“We often wait for them to come to us with what they need or want,” she said. “And we all know as parents that they will hide in their room and online. I encourage parents to actually go to where their child lives – in their room – and do a check-in there. You’ll learn so much more about them and from them if you ask permission to come into their space than if you wait for them to come to you to initiate a conversation.”

PUBLIC HEALTH CRISIS

In the wake of the slaughter of 19 students and two adults at Robb Elementary School in Uvalde, Texas, last May, IU Health President Dennis Murphy spoke directly to IU Health team members when he said, “We have a responsibility to call out gun violence as a public health crisis.”

“Many of our clinicians and leaders advocate for better public policy when our loved ones and neighbors are suffering and dying unnecessarily,” Murphy wrote. “We speak up about maternal and infant mortality, opioid addiction, tobacco and alcohol dependence, and most recently, COVID-19 vaccinations. Reasonable people may disagree on solutions, but we have a duty to advocate and speak openly when evidence-based research points toward responsible solutions. Remaining silent is unacceptable.”

IU Health is working to expand access to mental health services in the communities it serves, as well as advocate for public health policies that will help Indiana become one of the healthiest states, he said.

WHERE DO WE GO FROM HERE?

“My heart breaks to say this, but we’re going to be here again, unfortunately,” Dr. Rodriguez said. “As much as I wish that this was never going to happen again so we don’t have to talk about it, I don’t think that’s the case, given the rate that we’re seeing.”

To learn more about helping kids deal with stress related to gun violence, check out the National Child Traumatic Stress Network website, NCTSN.org.

Previous stories:

“We don’t want kids to get shot” - From the emergency department to behavioral health, team members stand ready to help patients and families in the aftermath of gun violence.

The ringing of a bell never sounded so good.

As Ryan Krueger gave three swift tugs on the golden bell handle, signifying the end of his cancer treatment, his parents, fiancée and other family members cheered in the cramped hallway at the Riley Outpatient Center.

Watching online were dozens more friends, family and colleagues spread out around the country.

It was the best kind of party. There were tears of relief and joy. There was laughter. And there was gratitude.

Krueger is not your typical Riley Children’s Health patient. He is 27, a graduate of Butler University and a product manager for a California tech company.

His introduction to the children’s hospital came 2½ years ago after debilitating migraines landed him in the IU Health Methodist Hospital emergency department multiple times. Often, the pain was so bad he was unable to speak.

It turns out they were not migraines at all, but something more frightening: B-cell acute lymphoblastic leukemia, doctors at Methodist told him in the fall of 2020, after a spinal tap to check for meningitis revealed the cancerous cells in his spinal column.

And his best bet for treatment, they said, was Riley at IU Health.

“They said the team over here was far more experienced and knew exactly how to treat it,” Krueger said.

That’s because B-cell ALL is a type of leukemia most often seen in pediatric and young adult patients (70%), and as Indiana’s only nationally ranked pediatric cancer program, Riley has the experience and expertise to treat the disease.

Riley oncologist Dr. Lindsay Blazin, who said about a third of her patients are over the age of 18 at diagnosis, has seen Krueger through the long months of treatment – both inpatient and outpatient – and she was there last week when he rang that celebratory bell.

“Ryan had 11 hospital admissions, received 19 lumbar punctures and underwent 861 days of treatment,” she said.

His case was a peculiar one, she acknowledged. Although a spinal tap found a large number of leukemic cells in his spinal fluid, multiple blood tests and bone marrow aspirations – the gold standard test for leukemia – did not detect leukemia cells in his marrow, which is typically where the disease starts.

“It is still a bit mysterious to me as to how and why he had all these leukemic blasts in his spinal fluid without having any identified in his bone marrow in multiple tests,” Dr. Blazin said.

But after consulting with multiple experts at Riley and other institutions around the country, the consensus was that there either had to have been leukemia cells there at some point, or they were below the level of detection, so the standard treatment regimen for the disease was indicated.

The treatment was rigorous and exhausting, and Krueger’s health was further complicated by neurotoxicity to one of the chemotherapy drugs, which left him unable to speak for a short time. In addition, he suffered appendicitis and required surgery at Riley during treatment, at a time when he had basically no immune system.

Add to that the worries about a new job and health insurance, and the stress was pretty high, he said. His fiancée, Anna Rauh, and his family saw him through all the ups and downs.

“I can’t imagine what the little ones have to deal with here,” he said when asked how it felt to be receiving care in a pediatric hospital. “It took a toll on me; I can’t imagine if you’re a baby or a little kid going through this.”

As the youngest of four siblings, among them an anesthesiologist and a pharmacist who were able to help him navigate the medical world, Krueger is grateful for the support that surrounded him on good days and bad.

“It was definitely frustrating to constantly have to go to the ER and it didn’t seem like anything was helping,” he said when he originally thought he was suffering from migraines.

“If they would have come back and said, ‘this is going to be your life; you’re going to have to come to the ER every few weeks for treatment,’ that could have been worse,” said Krueger, who blogged about his cancer journey at Giving It My ALL.

“I don’t want to diminish the diagnosis that I have because it could have been life-threatening,” he added, but if doctors had told him he just had to live with the chronic, debilitating condition, it would have been worse in his mind. At least with ALL, he could look forward to a relatively normal life after treatment.

“As soon as my mind got past what it was, it was sort of a relief to just know that there was an answer for why I was feeling so poorly.”

And, as a Downtown Indianapolis resident, he said he feels privileged and blessed to be so close to Riley, knowing that many patients and parents travel long distances for care.

Being diagnosed in the middle of COVID made for additional hardships, but Krueger says he appreciated the care and camaraderie of his nurses, some of whom were in on his plans to propose to his girlfriend in San Diego. While they haven’t yet set a date, the couple will be married in the bride-to-be’s hometown of Louisville.

Dr. Blazin, who describes her patient as “a sweetheart,” is pleased to see him doing so well today.

“He is in remission, and we anticipate he is going to have a long and happy and healthy life.”

In a blog post March 30, a few days after Krueger rang the Riley bell, his fiancée thanked friends and family for their support during a “hellish” journey.

While acknowledging undercurrents of anxiety going forward, Rauh said the couple will not give into fears for tomorrow.

“Every single day will be a celebration from here on out. Everything we do will be a chance to lean into joy, be present and grateful.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org, and Maureen Gilmer

A little crazy? Maybe, Brianna Presnell said about her family’s spontaneous decision to take a road trip to the beach for spring break. That’s because their family of five includes a medically complex child.

Ten-month-old Maverick Presnell spent the first seven months of his life at Riley Hospital for Children. He was born with a diaphragmatic hernia, a hole in the diaphragm that leads to organs in the abdomen shifting up into a baby’s chest and compromising the lungs. In addition, he was diagnosed with a heart defect.

Surgeons in Riley’s heart cath lab were able to repair the defect, but setbacks with his underdeveloped lungs meant he was never able to successfully come off his ventilator, so his parents opted to have him receive a tracheotomy to manage his airway.

He was discharged with a ventilator, oxygen and a feeding pump.

The idea of a 14-hour road trip was daunting.

“A spur-of-the-moment trip was the only way we would conquer our fears of taking Maverick and all his ‘extras’ so far from home,” Presnell said of her and husband Sean’s decision to travel. “I am so glad that we did.”

When the couple brought Maverick home from the hospital, they weren't sure family vacations were going to be possible, but that wouldn’t be fair to his two older siblings.

So, they spontaneously booked a condo on a Monday and arrived in Panama City Beach, Fla., two days later.

“It was a short trip, but it was just what we needed,” Presnell said. “It was a great time for everyone to relax and for us to know that trips are possible.”

Mav wasn’t a fan of the water, but he loved watching from his wagon as his brother and sister splashed around, his mom said.

And everywhere he went, he found a friend, she added.

“He never meets a stranger, which I think is from being in the hospital for so long and being exposed to so many different people.”

Asked how she might encourage other parents of medically complex kids who are afraid to travel, she suggests trying a small trip to begin with.

“Just know it’s OK to be afraid,” she said. “Plan for every possible emergency and know that you can’t overpack with a medically complex kiddo. Reach out to those in similar situations for any tips and tricks they may have.”

And then, she said, “Just take the leap of faith.”

“We all had a blast and are already planning our next vacation to the beach.”

Imagine spending your 18^th birthday in the hospital. Amy Gaytan can tell you it doesn’t feel great – unless you have friends, family and nurses like she does.

Admitted March 15 to Riley Hospital for Children for a “tune-up” to treat cystic fibrosis, Amy hoped she might be discharged by March 30, her birthday, but it wasn’t to be.

When her family and friends realized she would still be inpatient last week, they rallied to surprise her with a party on the pulmonary unit just after midnight Thursday.

Amy might have wondered if something was up when a few nurses took her on a walk around the unit late at night, but she never dreamed she would come back to her room and see friends and family members waiting to celebrate with her.

“I was really, really happy,” she said Monday, as she and her mom, Jacqueline Rodriguez, waited hopefully to be discharged.

“We hadn’t really planned anything, so I wasn’t expecting much. It was a bummer to have to be in the hospital on my birthday,” Amy said, “but at the end of the day, my health is more important.”

Nurse Erica Branam wasn’t part of the party planning, but she got permission from Amy’s mom to snap a few photos, wanting to capture the joy of the night.

She was, she said, “merely an observer to the goodness.”

After the initial surprise, Amy asked the nurses to come in and take a picture with her “so she could tell them how much they have inspired her to want to come back and work at Riley someday.”

Amy has been coming to Riley for treatment of CF since she was a baby, but it hasn’t slowed her down. The Crispus Attucks High School junior is taking college courses while in high school as part of the Health Sciences Academy.

Her sights are set on nursing, she said.

“Riley is my dream job. It has been forever. All of these nurses who take care of me, I am inspired to be like them.”

Amy, who said she can’t wait to get home and hug her two younger siblings, is set to take her certified nursing assistant exam this month and hopes to have a chance to work part time at the hospital while continuing her studies toward a nursing degree.

“I am motivated to work here and help other kids like me.”

It’s moments like these that fill Branam’s heart.

“It reminds us all why we’re here.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Nicholas Nedza is the center of attention in the hospital room – just as he should be.

The little guy is surrounded by his mom, his music therapist and his occupational therapist, while a photographer and others record his every yawn, gurgle, sneeze and smile.

He has just turned 4 months old, but he tips the scale at a slight 7 pounds. His mom, Liz, coos to him, “You’re the size of a real baby now!”

Born three months prematurely in November at the Riley Maternity Tower, Nicholas entered this world weighing just 1 pound, 8 ounces.

He might have been content to stay in the cocoon of the womb longer, but it was his mom’s health that necessitated an emergency C-section.

PRE-ECLAMPSIA SCARE

Liz Nedza’s blood pressure was elevated at her 24-week checkup, so doctors admitted her to Riley to monitor her and baby, hoping to hold off delivering Nicholas until the pregnancy was further along.

The dangers of pre-eclampsia, however, were too risky, so Nicholas was delivered at 26 weeks.

He has spent the past four-plus months in the neonatal intensive care unit at Riley Hospital for Children.

That’s where music therapist Kalin Hagedorn and occupational therapist Brittany McFarland teamed up to treat baby Nicholas recently, with mom right there, watching, learning and participating in his care.

As Hagedorn gently strums her guitar and begins to softly sing, “Hello Nicholas,” McFarland carefully places the baby on a blanket on the floor, speaking quietly, while he slowly wakes up and takes in the view around him.

Near the window, where his gaze lands, are paper chains – one link for every day that mom and Nicholas have been in the hospital.

“I started it while I was still pregnant in the hospital, one for every day while trying to stay pregnant, which only lasted about two weeks,” Nedza said.

She continued it in the NICU, writing a little something on each link and adding it to the chain, which the couple plans to drape around their son’s nursery when he goes home.

“There were lots of scary days, but also lots of really great days, so we can look back and cry and laugh.”

POSITIVE TOUCH

Nicholas is soon alert and seems to be almost giggling as he is surrounded by soft music, soft touch and soft lighting.

“Babies born prematurely often are overstimulated, especially here with the beeping and the sticks and the pokes,” McFarland said.

“So, we’re typically fighting an uphill battle just getting them used to positive touch, positive sounds and positive interactions. This is great that he’s able to tolerate the music and being on the floor, changing positions and being touched – all at the same time.”

It’s a marked improvement from the early days, she said, when he was super tiny and had to be swaddled before she could even lightly touch one arm.

The same is true for Hagedorn, who has been able to add more songs to her repertoire when she visits Nicholas.

“When I met mom, I could just tell she cared so much for Nicholas, and she’s here every day. It makes such a difference,” Hagedorn said.

“She shared with me that she’s never been a music person but that she so appreciates this time with me and Nicholas. She and her husband have written two songs for Nicholas. All I did was provide a template and they did the rest.”

The process helps new parents bond with their baby and feel supported during the songwriting, the music therapist said.

The music therapy team also provided a voice recorder to Liz and Kory Nedza, so they could record family members’ voices talking to Nicholas. Also on the voice recorder are songs sung by Hagedorn, so he can listen to them when he goes home.

Seeing the therapists work together for her baby, Nedza can easily get emotional.

“I cry more, but it just shows the well-rounded care,” the first-time mom said. “It’s not just the doctors and the nurses; it’s everybody. For him and for us. We’ve been here five months and it’s exhausting, but with Brittany, just to see the strides he’s making. And with Kalin, it’s just so beautiful. He gets mad when she stops playing.”

“SWEET BOY NICHOLAS”

By now, he recognizes Hagedorn’s voice, so he opens his eyes a little more when she begins singing and his heart rate slows a little.

To the tune of “You Are My Sunshine,” she sings one of the songs written for Nicholas by his parents.

“You are our baby, our sweet boy Nicholas. You make us proud when you are brave. We’ll always be there when you need us. We love you more and more every day.”

As Hagedorn sings, McFarland positions Nicholas on his side, encouraging him to get used to how his body can move, stretching his little muscles.

When Hagedorn shifts into a more upbeat song, “Annabelle Pancake,” McFarland moves Nicholas onto his stomach to build up his core strength. Next up is “The Ants Go Marching” and a little gentle percussion action.

At one point, Nedza laughs at her little boy and his “old man expressions,” wrinkled forehead and all.

“His happy place is sitting up and looking around.”

“HE’S DOING ALL THE HARD WORK”

It’s not been an easy journey for Nedza or her husband, but they tag-team to be by their son’s side as much as possible. Liz Nedza, a teacher, is on leave from Brownsburg Schools.

The positive attitude she exudes might come naturally, but she acknowledges that in the early days after Nicholas’ birth, she was in a state of “ignorant bliss.”

“I was positive everything was going to be OK, and then looking back, I’m like, oh my gosh, there are so many things babies don’t make it past, and he did. I just feel like at this point, look at this guy,” she said. “We have no choice but to be positive. He’s doing all the hard work.”

Nicholas still requires some respiratory support and is working on feeding, but his progress has been impressive, even after surgery last week to repair a hernia and place a G-tube, she said.

“We’ve gotten lots of extra snuggles this past week, and I definitely have no problem with that.”

She credits their support system at home and at work, as well as at the hospital for her upbeat attitude.

“We just feel so well taken care of and loved by the doctors and nurses and therapists and lactation specialists,” she said. “Everybody is here not just for Nicholas, but for all of us. We just feel embraced.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Seven-year-old Levi Galvez was acting every bit his age Monday morning at Riley Hospital for Children.

As he waited to receive multiple vaccinations, Levi pulled two tiny rubber bouncy balls out of his pocket and sent them flying across the small waiting room. Next, he fiddled with the lever on an exam chair, watching it go up and down. Then he turned off the lights and laughed.

All the while, he talked fast and furious about the new Nintendo Switch he was hoping to get, before settling in to watch “Space Jam” on his dad’s phone.

For Geovani Galvez, seeing his son like this is the answer to a prayer. Lots of prayers.

Because for the first time in five years, Levi was about to ring the bell in the Riley Outpatient Center hematology-oncology clinic, signifying that he is cancer-free.

Diagnosed at age 2 with acute lymphoblastic leukemia, Levi has endured multiple spinal taps, bone marrow procedures, chemotherapy infusions, radiation sessions, relapses and a stem cell transplant from his dad.

He’s lost his hair, his appetite and his good humor many times over.

But the cancer is gone now, and the hair, appetite and humor are back. And with Monday’s lifting of the mask requirement for most areas of Riley, also back is Levi’s beautiful smile for all to see.

After getting a good report from Riley hematologist-oncologist Dr. April Rahrig, confirming that Levi is 100% cancer-free one year after Geovani Galvez donated his own bone marrow to his son, the first-grader paraded before a group of cheering Riley staff and took his spot under the bell.

“We are all here to celebrate you,” Dr. Rahrig said to her young patient. “You have been battling cancer since you were 2 years old and you have won that battle,” she said.

“What? Cool,” he responded, before she presented him with a medal, a certificate and, best of all, a cookie.

“We are so proud of you,” Dr. Rahrig continued. “You are so brave, and now you get to ring the bell.”

As Levi rang the bell three times, team members lined the hallway, cheering, clapping and ringing their own small bells. Levi’s teacher FaceTimed his dad at that moment, cheering on her student.

“Ring that bell all day long,” she shouted with pride.

Dr. Rahrig said the team is still waiting for Levi’s immune system to recover so he can return to school, but she is pleased to see him so energetic.

“He’s doing great. The most rewarding part of my job is to see a kiddo go through their entire journey and then have them ring the bell. It’s awesome.”

For Levi’s dad, the moment was a long time coming. He was first set to ring the bell back in 2020, but COVID restrictions made it impossible. Then he relapsed – twice – before undergoing a stem cell transplant in 2022.

“This is big closure,” said Galvez, a former team member at IU Health Methodist Hospital who now works as an EMT for Indianapolis EMS.

“It’s been five years of trauma, not knowing when the end would be,” he said. “Today, we’re ending the mask restrictions here and closing out with the bell. It’s awesome because this will be the first time we can capture all the smiles.”

In his job as an EMT, the father of two sees heartbreaking scenarios of injury and loss every day, particularly when it comes to gun violence.

“It’s crazy how people don’t value life,” he said, even as his son fought for his own. “Through those times when he relapsed, you wonder if they are going to get the leukemia under control. Cancer can spread like wildfire.

“We wanted life for him, and here we are.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

Keeping watch over his son - Geovani Galvez hasn’t left his 6-year-old son’s side since the boy received his dad’s donated bone marrow last week.

He tried to take his own life. Now he is saving his son - Geovani Galvez lacked purpose and hope that July day when he shot himself. Seven months later, he is donating bone marrow to help his little boy beat leukemia.

Pediatric specialists from Riley Children’s Health worked their magic overseas again this month, operating on a dozen children in Amman, Jordan.

The medical team, led by Riley heart surgeon Dr. Mark Turrentine, donates its time to help children from Jordan, Iraq, Syria and Yemen who have little access to specialized cardiology care.

This month, the team celebrated “Mission No. 35,” representing 400 surgeries and 200 cardiac catheterization procedures since the medical mission trips began in 2007.

Missions also help train teams of specialists in Jordan to build expertise in the medical community there.

Joining Dr. Turrentine on this month’s mission were Dr. Anne Farrell, cardiology; Dr. Ali Wail, ICU; Dr. Riad Lutfi, ICU; Sheila Rocchio, CVICU nurse; Rachal Sperka, CVICU nurse; and Michael Horner, perfusionist.

Dr. T has mended many a broken heart during his three decades at Riley, but he would just as soon fly under the radar than be in the spotlight.

For him, these trips are about giving hope to parents who might otherwise have none.

“It’s pretty meaningful to see something good happen for families that are fairly desperate to have something good happen to them,” he said during a previous interview.

Kids like Lavi (pictured with Dr. Farrell), Joud (seen with Dr. T) and Aws (with Dr. Lutfi) are the lucky ones. Despite being born with serious heart defects, they now have a second chance at life.

“I would say of the kids we’ve operated on over there, I don’t know if it would be an overstatement that maybe 80% or 90% of them might not have gotten care if teams like this weren’t going over there,” the surgeon said.

“I’m just always very proud to travel with the Heart Center team,” he said after a previous trip. “No one could imagine how hard they work and the passion they have for it.”

Gift of Life Amman hosted a dinner to thank the team and others who have supported the medical missions over the years. Special guests included four former patients who returned to thank those who gave them back their lives.

Funding partners Rotary Club/Gift of Life Greenfield, the Josh Lindblom Foundation (significant Riley Children's Foundation donor) and Chain of Hope London continue to make the lifesaving missions possible.

Jerica and Tyler Rapp will be wearing mismatched socks and shades of yellow and blue today in celebration of World Down Syndrome Awareness Day.

But every day is an opportunity for them to celebrate their 7-month-old son, Theodore, born at Riley Hospital for Children last summer with Down syndrome and two heart defects.

Down syndrome is a condition in which a baby is born with an extra chromosome. March 21 was selected as the global awareness day to signify the uniqueness of the triplication of the 21^st chromosome.

It is the most common chromosomal condition diagnosed in the United States, occurring in about one in every 700 babies and resulting in developmental delays, intellectual challenges and some distinct facial features.

For the Rapps, the news that their first child would be born with Down syndrome came early in Jerica’s pregnancy.

As a neonatal intensive care nurse at Riley for six years, she has cared for many babies with serious birth defects, so she and her husband chose to learn through amniocentesis about any genetic disorders or other conditions their baby might have when Jerica was about 15 weeks’ pregnant.

Despite the shock of the diagnosis in utero and the emotional journey during pregnancy, Theodore has brought them more joy than they thought possible.

“We always knew we wanted him,” Jerica said. “My husband and I believe that every child is worthy, but you definitely go through a process where you almost grieve for this life that won’t be what you planned.”

Instead, she believes, it’s quite possibly better.

“There’s a lot of reframing in your mind, where you separate yourself from what you thought your life was going to be, then prepare yourself to grow into what your life will be.”

Part of the adjustment they had to make was not just their son’s genetic condition, but also the heart defects that often are present with Down syndrome babies.

The couple had planned to deliver closer to their Rockville, Indiana, home, but when they learned about Theodore’s heart defects, they knew delivering at Riley’s Maternity Tower would be the safest choice.

Theodore, who is followed by Riley cardiologist Dr. Michael Johansen, spent time in the Riley NICU and in the CVICU (cardiovascular intensive care unit) after surgery by Dr. Mark Rodefeld to repair a condition called coarctation (or narrowing) of the aorta, causing the heart to pump harder to move blood through the aorta.

The initial separation from her son after birth caused the first-time mom some distress, but knowing that he would be cared for by her colleagues in the same building gave her immense relief, she said.

“Having our child in the NICU was never anything I imagined would happen, but once we found out he was going to need NICU care and I was going to need to deliver at the maternity tower, it was a big relief to know that my peers were going to take care of him,” Jerica said.

“It’s so hard when you have that initial separation and you have to go through recovery, but I knew all of the people who were taking care of him – from the nurses to the doctors to the respiratory therapists. He was with the best possible people.”

One month ago, Theodore had another heart surgery by Dr. Rodefeld to repair atrioventricular septal defect, a hole between the chambers of the heart.

The difference after surgery has been amazing to see, Jerica said.

“We’ve seen a huge change in his personality and in his ability to do things. Before, he had the symptoms of heart failure – he would get tired easily and sleep a lot. Now, he has this big, vivacious personality, and he smiles all the time, and he giggles.”

With increased energy and support from occupational therapy, he is reaching more and more milestones, including rolling over, holding his head up and working on sitting up.

He might be behind most babies his age, but his parents are savoring every victory, no matter how small.

“One thing we’ve found is that as first-time parents we don’t have an older child to obsessively compare him to. It’s kind of nice when you realize that when your child takes longer to do things, you get to cherish and celebrate those little things more, like holding a rattle or switching hands for toys. We notice those things a lot more, so we appreciate those baby steps.”

The Rapps announced their pregnancy and Theodore’s diagnosis on social media on Down Syndrome Awareness Day last year and found a network of community support.

“This was our first chance to share him with the world,” Jerica said. “To say, this is my child, this is what he’s facing, and we’re proud of who he is.”

That announcement connected them with many people in the Down syndrome community, and they participated in the Down Syndrome Indiana Buddy Walk in Terre Haute last April before their son was even born.

Today, on World Down Syndrome Awareness Day, the Rapps will wear brightly colored mismatched socks as a nod to the notion that chromosomes look like socks, and they will visit businesses in their community that are supporting awareness efforts.

Seven months with their son has been “wild and crazy and unpredictable,” Jerica said, “but the amount of growth my husband and I have felt because of him is amazing.”

“He has opened our eyes to this whole new way of life and challenged us to be better people, more accepting people, more inclusive people. Now that we’re here and past all of the fear, I think it’s probably the best version of our life that we could have asked for.”

The Down Syndrome Program at Riley Children’s Health provides specialized and coordinated care for children with Down syndrome.

As a nurse on the stem cell unit for Riley Children’s Health, Jake Harmon has plenty of bling on his badge.

There’s a Red Shoe award and a Daisy – both recognizing his impact on his patients and families – and there are his certifications as a pediatric nurse and a bone marrow transplant nurse. Today is Certified Nurses Day, recognizing nurses who go above and beyond to earn the highest credentials in their specialty.

In the future, Harmon said he might even go for an advanced practice provider license in oncology. He is beloved by his patients and his co-workers and earned the prestigious Margaret Martin Award in 2021, named for a pioneer in patient and family care at Riley.

But the bling on his backpack might be even more special than all the honors and credentials. On it are dozens of wristbands given to him by patients who were or are doing battle against cancer.

“My backpack is basically my purse,” said the Riley nurse, who’s been on the job for 13 years. “On each strap I have 13 years’ worth of wristbands that kids have given me.”

The bands signify a mixture of hope and respect for his pediatric patients – some who have survived and others who have not.

But none will be forgotten. Not by this nurse, who has spent his entire career in the Cancer Center at Riley Hospital for Children.

“I wear about eight to 10 bands on my wrist at any given time, but I can’t wear them all on my body,” Harmon said. “I think the kids enjoy seeing them. I joke with them that if I ever take their band off, it’s going on the wall of fame, which is my backpack.”

For Harmon, the symbolism is important. When he takes one off and puts it on the backpack, it’s either because the patient is out of treatment and doing well, or the child did not survive.

“I still want to honor them and honor their fight.”

Asked how he protects his heart working in a children’s hospital, Harmon points to the advancements in cancer treatments that he has witnessed in just his 13 years on the job.

“Some kids weren’t able to be saved, and it really hurts, but there is hope for the future. That keeps me going,” he said.

“I’ve been a nurse long enough to see kids surviving cancers that they used to not survive because a specific treatment was not available. Now, CAR T-cell therapy and new drugs and antibody treatments that were once under study are now standard of care and saving lives.”

It’s encouraging, he said, and keeps him optimistic.

“If you work here long enough, you can see how much better things get. And I want to see what will happen in the next 13 years.”

Harmon, 38, shares his optimism with new nurses as he orients them to Riley in his coach role.

“Things are getting better, which is why it’s so cool to work in oncology,” he said. “I love to fill them with that hope.”

His upbeat spirit and caring co-workers carried him through his own heartbreak just before Christmas 2021 – mid-pandemic – when his house was heavily damaged in a fire.

Since then, they have rallied around him to provide a place to stay and support him in his reconstruction efforts.

“I moved to Indianapolis 13 years ago to work at Riley, so I have no family here. The people at work have been my support system.”

Just in the past two months, Harmon has moved back into one room of the house while work continues on the rest. For much of 2022, he worked extra shifts to help out his IU Health nursing team while also giving him a financial cushion for repairs.

During all of the turmoil of the past 15 months, Harmon has continued to focus on his work family and his patients, which is why nursing certifications are important to him.

“Certifications lead to better patient outcomes,” he said. “The more skills a nurse obtains, the better equipped they are to provide their patients with higher-quality care. They validate a commitment to learning and growing.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Little Indie Dakota Mark is celebrating her first birthday Friday, St. Patrick’s Day.

Her Lucky Charms-themed party is on brand and a nod to the Mark family’s lucky little leprechaun.

Indie, the youngest of Kyle and Taylor Mark’s three children, may have been dealt a rough hand at birth, with a diagnosis of cystic fibrosis, but she and her parents are stepping into a world of new treatments and advancements in science.

The diagnosis of CF, which was picked up on Indie’s newborn screening, came as a complete surprise to the Marks, whose older kids don’t have the disease.

The progressive, life-threatening condition, which causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body, can result in poor nutrition and growth, frequent respiratory infections, breathing problems and chronic lung disease.

“When we found out about CF, we just knew what we’d seen in movies, and they only show the terrible things,” Taylor Mark said. “There are new treatments that she doesn’t qualify for yet because she is too young, but they are changing the game.”

Trikafta is a new FDA-approved therapy for ages 6 and older that combines three drugs to target a defective protein in the body. It is not a cure, but it is considered a highly effective therapy that is extending life for tens of thousands of CF patients with the Delta F508 gene, which Indie carries.

Another new treatment, Orkambi, was recently approved for children ages 1 to 2 who have two F508del mutations.

Because of her diagnosis, Indie, who is under the care of Riley Children’s Health pulmonologist Dr. Angela Delecaris, has been a frequent visitor to Riley. She has been admitted three times for two or more weeks at a time due to respiratory infections.

The most recent stay was in November, when she was hospitalized with RSV and other respiratory viruses.

“With CF kids, when they get a bug, their mucus is so thick it just attaches to them and it takes them longer to get over something,” Mark said. “She was very sick and was in the ICU for a week and a half. It was really bad, but she’s a lucky little baby.”

Outside of those emergencies, Indie is seen regularly in Riley’s Cystic Fibrosis Clinic, the only pediatric center accredited by the Cystic Fibrosis Foundation in the state.

Indie is one of about 340 CF patients who are seen in the clinic, which has a large team of physicians, nurses, social workers, respiratory therapists, pharmacists, dietitians and child life specialists dedicated to patient care.

“Everyone we’ve come in contact with has gone above and beyond for Indie,” Mark said.

Social worker Kayleen Jones has gotten to know Indie and her family over the past year and shared how Mark has found a creative outlet to spread awareness of cystic fibrosis. She embroidered a pair of lungs on a tiny purple sweater for her daughter.

Purple is the awareness color for CF.

“CF primarily affects the lungs, so this is a super cute way for her to show that her daughter has a chronic lung disease, but also an amazing way to take care of her own mental health,” Jones said.

Mark has done embroidery for friends and family members as well, in part to thank them for their support of her little girl.

At home, Indie gets plenty of special treatment from her older siblings, who described her as a “cute little chicken

rat” when she was born. The name stuck, Mark said. The nurses on the pulmonary floor lovingly refer to her as “chicken rat” at times.

Indie, who has a G-tube to make sure she is consuming enough calories, gets multiple breathing treatments every day at home.

“It was a lot at first, but we’re doing better now,” her mom said. “We’re finding out what’s working for her.”

Jones understands the stress a CF diagnosis can bring.

“We have a big team to support them because we know how much time it takes, and we know how hard it can be on these families when we’re asking them to do all of this,” the social worker said.

Older CF patients who are doing well are seen in clinic every three months so the team can check their lung function, weight, mental health, etc., and smooth out any issues with prescriptions and insurance.

CF is a condition most people don’t know a lot about, Jones said, “but I would argue it’s one of the hardest chronic illnesses to manage, and I think people should know how hard these kids work to keep themselves healthy.”

With the advances in treatments, Jones has seen her role widen from supporting young kids and families to working with teens on plans for their future.

“We’re helping them transition to adulthood, talking about college and life goals,” she said. “It’s very exciting.”

Mark agrees, saying the evolution in therapy gives her hope.

“Nobody wants their kid to have CF, but science is just amazing.”

Photos by Gwen Mark and Taylor Mark

After just 2½ weeks in the NICU at Riley Hospital for Children, twins Hayleigh and Rachel Koehn were cleared to go home last week.

The twins were delivered six weeks prematurely at Riley’s Maternity Tower last month. They had been diagnosed in utero with twin-to-twin transfusion syndrome, a rare, life-threatening condition that required the first fetal surgery of its kind in Indiana.

TTTS can affect identical twins or other multiples who share one placenta and a network of blood vessels that supply oxygen and nutrients for development in the womb. It results in an imbalance in blood flow to both babies.

Riley’s fetal surgery team, led by Dr. Hiba Mustafa, performed laser surgery on the twins in the womb in November.

Now the girls are keeping their parents, Rebekah and Daniel Koehn, hopping at home in Veedersburg, Indiana, and getting to know the family dog, Maverick, who is no longer the baby of the house.

Asked how it feels to be home with their girls, Rebekah said: “Exhausting in the best way. We love having them home and being the sole caretakers of them. For me, I feel like an actual parent since they aren’t in the NICU anymore. Now to just get the nights figured out, so we can get better sleep.”

Lauren Hawkins can still remember celebrating when her daughter would eat one tiny Goldfish cracker.

It was a big deal for a little girl who couldn’t or wouldn’t eat much of anything by mouth.

“And now she’s probably my best eater,” the Pendleton mom of three said of her youngest child, Clara, now 6.

Oral aversion is a real thing – that fear of allowing food or anything to touch the mouth. And in this case, it likely was brought on by Clara Hawkins’ complicated medical history, which involved multiple abdominal surgeries, intubation, a feeding tube and specially blended formula just to keep her alive.

Dr. Charles Vanderpool, pediatric gastroenterologist and medical director of Nutrition Support and Intestinal Rehabilitation for Riley Children’s Health, has been on Clara’s team since the early days when she was born 14 weeks premature.

He and the clinical nutrition team continue to see her for follow-up care to track her growth and development after a shaky start.

Born in November 2016, she was transferred to the neonatal intensive care unit at Riley Hospital for Children, where she remained until the following May.

Lauren and her husband, Troy, didn’t know if their daughter would survive. She was hit with multiple complications, the most serious of which was NEC – necrotizing enterocolitis.

The condition, which primarily affects premature babies, inflames intestinal tissue, causing it to die. Clara had a section of her intestines removed at just 10 days old, leaving her with “short gut syndrome,” where the body is unable to absorb enough nutrients from foods because there is not enough small intestine.

Clara’s prognosis was relatively good after that operation, but she developed complications several weeks later that required more surgery.

She went home with a central line for TPN (total parenteral nutrition), as well as an NG (nasogastric) tube.

“We were doing IV nutrition through the central line and feeding her through the NG as well,” Lauren Hawkins said.

She was in and out of Riley multiple times for the first two years and endured six surgeries.

Even though she is a nurse by training, Hawkins acknowledged that her daughter’s complex medical situation was daunting. She recalls clearly a conversation she had with Dr. Vanderpool when Clara was in the NICU.

“He said he would be with Clara for the duration, even when she goes to kindergarten,” Hawkins said. “I just looked at that baby and thought, how in the world are we going to be able to send that child to kindergarten?”

Well, it happened last fall. Little Clara Hawkins started kindergarten. No tubes or anything to slow her down.

She’s tiny, for sure – 36 pounds at her most recent weigh-in – but she’s mighty, Dr. Vanderpool said.

“She is gaining weight, but super slow,” he said, acknowledging Hawkins’ concerns about her daughter’s size. “At this age, she might not gain weight for a month and the next month, she could gain 2 pounds.”

Developmentally, she looks amazing, Hawkins and the physician agreed. And academically, she’s a “superstar,” her mom said.

“In her kindergarten class, she isn’t the smallest, but she definitely is on the smaller end,” Hawkins said. “She’s just a peanut.”

She eats well – chicken nuggets are her favorite – so it’s a mystery to her mom why she is so tiny.

During a recent visit to Riley at IU Health North Hospital, Dr. Vanderpool offered Hawkins samples of liquid supplements to boost Clara’s calorie intake and suggested adding more butter, cream, oil and whole milk in everyday cooking for Clara’s benefit.

She drinks mostly water, her mom said, because she refuses to drink milk.

“She may need to eat more calories to make up for the calories she’s not drinking,” Dr. Vanderpool said. “We know that her absorption is not 100 percent because she doesn’t have full intestinal anatomy.”

Finding the sweet spot in Clara’s nutritional health has been a delicate balance for years, Hawkins said, a journey that has required close partnership with Riley’s nutrition team.

They have literally been a lifeline through some of Clara’s most challenging days, Hawkins said.

“Each kid with short gut is so different in what they can tolerate, and the nutrition team has been a big part of figuring out what we can do next, whether that was getting her off TPN, advancing her NG feedings, figuring out what she could tolerate and how much volume to give her, or getting her to stop throwing up.”

The dietitians helped Hawkins develop a plan for a blended diet, which included a complicated recipe with formula, baby foods, oil and other nutrients.

“No way could we have done that on our own,” Hawkins said. “I appreciate that whole office and how kind and caring they were and how willing they were to work with me as a parent to figure out what was best for her.”

That same team will be recognized next month with a national Clinical Nutrition Team of Distinction Award. The award will be presented at the ASPEN Nutrition Science and Practice Conference in Las Vegas.

“That cohort that came together to take care of her – the surgery team (headed by Dr. Fred Rescorla), the nutrition team, the GI team – were such integral parts of her care. They have been with us since the very beginning.”

That thought takes Hawkins right back to those days in the NICU when she couldn’t imagine life for her little girl beyond that moment.

Now, Clara is thriving.

“She is so fun and bright, very clever, spirited and a little stubborn,” her mom said.

“We are still figuring out how her gut responds to different things, but she can eat pretty much a normal diet. Most people who see her would never guess that she had been through so much.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

She is described as the “heart and light of our NICU.”

“A gift and a treasure.” “Selfless, kind and compassionate.”

The words tumble out of friends and colleagues when asked what longtime nurse Deb Hutchison – “Hutch” to her friends – means to them.

After 45½ years spent caring for the tiniest babies at Riley Hospital for Children, Hutchison hung up her red scrub top for good last week, following a Sunday shift with a pitch-in lunch and hugs for all.

“She has always been the person who worked so hard to be sure a pitch-in was perfect, planning countless parties for holidays and special moments in our lives,” said RN Jennifer Stark.

“I love a party,” Hutchison said. “I love people.”

It had to feel a little strange not to plan this party, but Hutchison discovered being the guest of honor isn’t so bad. She swapped stories with fellow nurses, aides, physicians and emergency personnel, all there to thank her for being a friend, mentor and compassionate caregiver.

“In addition to tirelessly advocating for her patients and families, Deb is the person who kept us united and made everyone feel welcome and included,” Stark said.

“She was always, for me, a source of knowledge and an example of how to treat staff, families and all people. She unified us.”

When Stark joined the NICU team at Riley 20 years ago, her manager asked what she would value most in a preceptor, the person who would guide her through the first several months of her nursing career.

“Please just choose someone nice,” she said at the time.

“Why did I say that? I have no idea. I must say that my manager at the time, though, gave me the greatest gift. Deb didn’t really precept many people, but she assigned me to her. Since then, she has been there and cared for me through everything.”

YOUNGER YEARS

Hutchison was just a young mom herself when she moved to Indianapolis – a city where she knew no one – to take a nursing job at Riley.

She was nervous, of course, but she found a second family there, even as her marriage ended barely a year later.

“I wasn’t sure why God put me here at first, but this place and these people carried me through,” she said. “I feel if we can share burdens and joys from our personal lives, we can be more supportive and forgiving in our professional lives.”

Over the years, she grew in her faith, her confidence and her role in the neonatal intensive care unit. She was a trusted colleague, confidante and caregiver – for patients, parents and peers.

Admittedly, she struggled with the idea of retiring. This job has given her so much, she said, more than anyone could know.

“I’ve been praying for two years that God would let me know when it was time and show me what he has for me next,” she said. “Each day, I would ask him to show me that I made even one difference in someone’s life, and some days it came at the last minute of my shift.”

During most of her time at Riley, Hutchison enjoyed the adrenaline rush of critical care like most intensive care nurses do, she said.

“My preferred babies were the micro preemies. The perfect scenario for me was to be the admitting nurse, build a support team of nurses and respiratory therapists and go all the way to discharge day. It rarely happened to perfection, but when it did, it was stellar care – best for the patient, family and team.”

There were preemies like Brianna Brooks, who was born at 24 weeks, weighing just over a pound. Hutchison recently got a chance to see that tiny baby all grown up now – two-plus decades later.

EVOLUTION OF CARE

Four decades of NICU nursing is bound to come with many changes, and Hutchison has seen her share. The biggest change for the long-term health of preemies was the development of surfactant and improved ventilation to support babies whose lungs were not fully developed, she said.

The switch from open modules to private rooms for babies has been a mixed blessing, she believes. It is quieter and less disruptive for babies and parents, but it doesn’t allow for as much interaction with other parents and team members.

Still, Hutchison found a way to support patients, parents and co-workers.

Sherrese White remembers.

“I remember starting out in the modules as a new nurse, and the NICU is such a hard place to start out as a baby nurse, but Deb was one of those nurses that welcomed and encouraged me,” White said.

“She's always been a wonderful nurse who truly cares for her patients, and it’s because of her and other nurses like her that I am still here today doing what I was meant to do.”

FREE HUGS

For Emily Crandall, Hutchison was a welcoming presence from her first day as a nurse on the unit.

“There were free hugs, doughnuts, bagels and compliments every time she saw you,” Crandall said. “Deb has a way of making you feel like you are the most beautiful, hardworking person out there. She was the grandma of the unit and one of the first people I went to when I needed to smile after a long shift. She always knew exactly what to say.”

ECMO clinician Teresa Harvey said Hutchison’s upbeat attitude and genuine interest in others made working with her a pleasure.

“She has a heart of gold and will be missed by her patients and the entire NICU team.”

When fellow nurse Molly Nice marveled at how many lives Hutchison must have touched over the years, the retiring nurse deflected the compliment.

“I really just have to be thankful for all those who have touched my life in those years,” Hutchison responded.

“I think that really just encompasses exactly who Deb is and what she lives for,” Nice said. “Selfless, kind, compassionate. I can’t thank Deb enough for all the memories and the love.”

Pam Schoonveld worked with Hutchison for the past 32 years, their shifts sometimes overlapping from nights to days.

“Deb has been an icon on our unit, and her retirement marks the end of an era for the Riley NICU,” Schoonveld said. “I've looked up to her as a nurse, a person and as a spiritual leader. I'm so excited for her … but I also get a little sad knowing that I won't get to see her smiling face or get a big bear hug from her after a grueling nightshift when she arrived for her dayshift.”

Penelope Eldridge also remembers those hugs.

“Deb taught me how to really care for patients and their families,” Eldridge said. “She got attached to all her babies. And she would give everyone hugs – parents and nurses.”

BAG OF MEMORIES

Two days before her last shift, Hutchison spent precious time going through her work bag – the same bag she has carried for years. (She’s frugal like that, she said.)

What treasures did she find in that bag?

A few pictures of patients destined for her fridge, a prayer for nurses, a collection of pins, thank-you notes, a screwdriver to replace batteries in patients’ mobiles and music boxes, a Bible and a key given to her by a parent whose child was in the NICU years ago.

It’s labeled “trap door key,” and it referenced Hutchison’s penchant for wandering among the NICU modules and visiting with other parents, sometimes walking people who were lost where they needed to go.

“I was always finding someone to talk to in the halls when I stepped out,” Hutchison laughed. “People would say she has fallen through the trap door again.”

As that door has opened to retirement, the veteran nurse is adjusting to life outside the NICU, but she still gives free hugs and advice.

“We make a difference every day. Choose to make it a positive one. Be kind and forgiving to yourself. When all is finished, the reward is greater than the effort,” she said.

“Riley has been my family, my identity and my support and has nurtured my heart’s desire. In all honesty, I can say that I received more from my time at Riley then I gave. What a blessing.”

What a blessing indeed.

A luncheon and NICU reunion are tentatively planned for April 30. Details to come.

Related:

The repairman’s words stunned her: “I was ECMO Number 2” - They met over a washer and dryer, but their story goes back 32 years. Read how this Riley Hospital nurse and a stranger discovered a lifetime connection.

Twelve-year-old Wes Hadley has spent his whole life in and out of Riley Hospital for Children.

“This is our second home,” Tellesa Hadley said recently, while her son joked with one of his favorite people at Riley, child life specialist Courtney Lyon.

That’s true in more ways than one. Hadley has worked in the Cancer Center at Riley for 27 years, most recently as a unit secretary. She took time off to care for her son but will return to work next month.

Imagine how good it felt for mom and son to leave Riley recently with the greatest gift of all – a new heart.

Wes, who was born with a congenital heart defect known as hypoplastic left heart syndrome and transposition of the great arteries, has had multiple surgeries to repair his heart, but in the end, a transplant was the only thing that would save him.

“At one point, we thought he needed a heart and lung transplant, but Dr. (Robert) Darragh came into our life and saved him,” Wes’ mom said.

Dr. Darragh, a Riley cardiologist who works closely with transplant patients, and transplant coordinator Regina Rossetter got Wes on the transplant list.

“For a long time, he wasn’t a transplant candidate, Hadley said, “so we’d been waiting for this.”

They expected to be waiting for months. But Wes was at Riley just 10 days before he was matched with a donor heart.

The Jan. 21 surgery, performed by Dr. Mark Turrentine, went well, and Wes was in the cardiovascular intensive care unit for a couple of weeks before being moved to the stepdown unit.

Now that he’s home, his mom can breathe a little easier.

“He has been sick his whole life, and now we are just over the moon,” she said. “He has a new heart. I think I’m still in shock.”

After working at Riley for so long, Hadley knew it was a special place, but she was touched by the care her son and family received.

“The people here have been wonderful to him. He has such a good team. And people outside of here have been amazing, too. It shows you there are good people out there,” she said.

“We’ve lived his whole life wondering what the doctor was going to say next, and now I feel like he’s got a new lease on life. He will be able to do so many things.”

The first thing on his list?

“I’m going to pet my dogs,” Wes said.

His pups, Tango and Cash, were more than ready for that reunion, laying sloppy kisses on his face.

New heart, same boy. Home at last.

The pediatric cardiology program at Riley Children’s Health is ranked best in the Midwest and No. 6 in the nation by U.S. News & World Report.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Fifty-five days after he was rushed to Riley Hospital for Children, near death from an attack of flesh-eating disease, Bryson Crenshaw victoriously rang the bell signifying the end to his inpatient treatment Wednesday.

Surrounded by his parents, Ben and Megan, and a team of Riley clinicians, 4-year-old Bryson meticulously placed his paper butterfly on the Riley rehab wall before ringing the bell – timidly at first, until his dad chimed in with a few tugs.

Bryson completed 3½ weeks of physical and occupational therapy on the inpatient rehab unit after a month of treatment in the hospital’s pediatric intensive care unit.

His mom has been by his side every step of the way, sleeping, showering, eating and praying within Riley’s walls, while his dad has been working and caring for Bryson’s older brother at the family’s home in Lafayette.

But together, they are taking their little boy home. Home to a feast prepared by Ben Crenshaw, a professional chef, and to a surprise reunion with Bryson’s brother, who left for school Wednesday not knowing that Bryson would be coming home that day.

“It’s a little surreal,” Megan Crenshaw said while packing up Bryson’s room Wednesday morning.

The past two months have been a blur for her and her husband, as their previously healthy son came perilously close to dying from necrotizing fasciitis, a rare bacterial infection that spreads quickly, eating away at the body's soft tissue, thus the term flesh-eating disease.

“It came out of nowhere,” she said after his diagnosis. “We thought he had the flu.”

When Tylenol failed to bring down his 104.5 temperature, they took him to IU Health Arnett Hospital in Lafayette, where doctors noticed swelling in his right leg, and tests revealed he likely had necrotizing fasciitis.

Accurate diagnosis, rapid antibiotic treatment and prompt surgery are vital to stopping the deadly infection.

Overnight, Bryson was transferred to Riley, and eventually his leg was amputated above the knee.

“It was life over limb,” his mom said.

An 11-year-old Florida boy died from the same infection Jan. 27.

Bryson, who celebrated his fourth birthday while at Riley, has been showered with gifts, cards and prayers from family, friends and fellow church members.

With his pint-sized walker and wheelchair, the boy who loves actor Jamie Foxx, Nerf gun fights, Nintendo Switch and LEGOs has been learning how to adjust to life with one leg, but that’s only temporary, says Riley rehab physician assistant Ben Schrock.

A custom prosthetic will eventually be designed for him, giving him the freedom to move more easily, Schrock said.

“He’s gonna be on the go. I think he will find a way to do everything he wants to do,” Schrock said, as Bryson wheeled himself back to his room to finish packing for home.

“He has done awesome in rehab. I know he’s been super excited to see his dog, Ace, and his brother. Those things have motivated him.”

Bryson will continue outpatient therapy in Lafayette but will return to Riley for follow-up appointments as he continues to heal.

“I’m ready to get him home and see how he does outside the hospital setting,” Megan said. “He has made a lot of progress. He’s rocking it.”

Maybe it’s his young age, but Bryson has literally been rolling with the hand dealt him, she said.

“He’s been asking a lot more questions about the infection,” Megan said, … “but he was excited to pick out colors for his custom wheelchair (yellow and blue, with LEGOs on the wheels).”

“I’m gonna be wheeling it,” Bryson said with a shy smile.

The custom chair will take about three months to design and build.

While his parents acknowledge being terrified and confused when their son was diagnosed with a disease they’d never heard of, they are trying to take their cues from him going forward.

And right now, he’s just eager to get home so he can see his dog, have a Nerf gun fight with his brother, and maybe watch one of his favorite Jamie Foxx movies.

“He is ready to bust out of here,” Megan said.

She and her husband are right behind him.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Check out our previous story on Bryson here: Flesh-eating disease strikes 3-year-old

Rachel Scott, family support coordinator for the NICU Nest with Riley Children’s Health, invited families to talk about their journey with a rare disease. Following are some of their stories.

Charlotte Grace, as told by her mom, Tiffany Reuzenaar

Twenty weeks into pregnancy is supposed to be such an exciting time. You get to see how big your little peanut is, and if you choose, find out if you are having a boy or girl.

My husband and I went for that anatomy ultrasound on a Wednesday, my day off. It happened to be my OBGYN’s day off as well. Everything was exciting until I saw the facial expression of the ultrasound tech. I looked at the screen, and it was hard to differentiate things. She excused herself. It felt like a gut punch, not knowing why she left.

In comes one of the doctors I had seen previously. She let me know they were unable to tell me what I was having. That I had barely any amniotic fluid, and that they were not able to find kidneys. They wanted to send me to a prenatal diagnosis with one of Indianapolis’ hospital systems. They were able to get me in the next day.

After the ultrasound, a male doctor told us they could not find kidneys, and half of the heart was not working. It would just be a matter of time before our baby passed.

My OBGYN called me after the appointment to ask how it went, and I told her what they had said. She gave me my options. While we waited for the results of a genetics test, we would do weekly heartbeat checks with the doctor. Weeks went by, our baby girl was still with us, and eventually she started gaining a little more amniotic fluid with each ultrasound. My doctor decided to send me to see Dr. Sherrine Ibrahim with IU Health Maternal-Fetal Medicine.

We got in very quickly, but this experience was much different than before. Not only did we see Dr. Ibrahim, there was a whole care team for us. A cardiologist came over for an ultrasound and told us that our baby’s heart was working fine. All chambers were pumping as they should be. My husband and I were shocked. The experience was completely different. Every person we met was so kind, caring and empathetic. The doctors set up an MRI at Riley Hospital to check to see what the status of our sweet girl’s kidneys were and anything else they may find. At that later date for the MRI, there was a possible small functioning kidney. Her lungs were also underdeveloped from not having amniotic fluid for so long.

We had checks with both my primary OBGYN and Dr. Ibrahim and her team. Once we got close to my due date, we had a meeting with our baby’s entire care team. I had never heard of such a thing happening. It was incredible to have all these people who would be responsible for her around one table.

On Aug. 28, 2015, I went in for a non-stress test with my OBGYN. A C-section had been scheduled for the next week. Our baby failed the NST. I was sent to Methodist Hospital for them to monitor me. It did not seem like I was hooked up long before we decided it was time to get this sweet girl out. Dr. Lauren Dungy-Poythress got our girl out quickly. Charlotte Grace was born at 9:14 p.m., weighing a whopping 2 pounds, 12 ounces. It was a few minutes before we heard noises from our daughter, but when we finally did, it was such a sweet sound.

They took her quickly to be able to work on her. I sent my husband with them. He was able to hold our sweet girl before they intubated her. Once I had been taken back to my room, my husband came in and let me know they were going to bring her to see me before she was taken to Riley. I remember them bringing her in; she was so tiny, intubated, wires everywhere.

I was released from Methodist a day early due to how grave her prognosis was. We almost lost her the second night. The nurses let me hold her that entire night. Around 8 a.m., I met Dr. Gregory Sokol as he was rounding. We had some difficult conversations, but he was kind and understanding about it all. He took in what I was telling him, and we made a plan to basically help her the best we could.

Charlotte Grace lived for nine days. The time at Riley was the longest, quickest, biggest blur in my life. We had so many amazing nurses and doctors who came to check on us during our stay. The woman who would come in to straighten up our room every day was so kind. The child life specialist made sure we were able to navigate various programs, and they made sure we had toiletries. The nurses made sure I ate, made sure I occasionally left the room to get some sunshine, and reminded me frequently I just had a major surgery. We also made lifelong friends who were next door. There are so many good people, so many amazing Riley parents to lean on.

Charlotte Grace passed away early Sept. 7, 2015. I would not have had any of that time if it were not for Riley Hospital. They gave us every second with her. About a month after her passing, Dr. Sokol called me to let us know that testing came back and Charlotte had a chromosomal abnormality called Triploidy Syndrome. Instead of two sets of chromosomes, she had three total sets. Triploidy babies typically do not survive past the first trimester. He told me he had never seen a triploidy baby make it to term, let alone nine days of life. She is a miracle. I cannot thank Riley and the entire team for giving my family time with our sweet Charlotte Grace. Our lives are forever changed from our brief time with our sweet angel.

In 2016, Tiffany and her husband, Justin, started an annual toy drive honoring Charlotte’s birthday and benefiting the Riley Cheer Guild.

Kamdyn Weikel, as told by his mom, Kelsie Weikel

Hi, my name is Kamdyn, and I am 17 months old! I have something called Cornelia de Lange syndrome (CDLS). My mommy found out a little bit about my diagnosis when she was 20 weeks pregnant. She found out that I had something called micrognathia and a cleft palate. Micrognathia is a condition in which the lower jaw is undersized. She went to Riley Hospital once a week after to make sure I was growing the way I should be.

When I was born, I had to have a breathing tube because my jaw was small, and my tongue was covering my airway. I also had to have a feeding tube to make sure I had the nutrients I needed. All the doctors were so amazing and took great care of me.

When I was in the NICU, the genetic doctors came and took some blood from my umbilical cord after I was born. My parents waited anxiously after the blood draw for the results. Then the day finally came, and all the genetic doctors and nurse practitioners sat down with my mommy and daddy, and they got the news about Cornelia de Lange syndrome. Children with CDLS have lower birth weight and are smaller in size and height with a smaller head circumference. They may have moderate to severe intellectual disability, behavior problems and autism. Some children also have distinct features and hand, arm and finger abnormalities. At birth I had three fingers on one hand, a heart murmur, webbed feet, lung disease and cysts and fluid on my kidneys.

I had surgery to put mandibular distractors in my jaw. The surgeons came to my room twice a day to turn the distractors to help my jaw grow out. The distractors were a success, and I was able to get down to a half liter of oxygen. I was able to leave the NICU after 134 days.

I work with a lot of Riley doctors. I also do physical and occupational therapy. I see pulmonary for my lung disease and my central sleep apnea, and neurosurgery for the shape and size of my head. I also see plastic surgery for my hands and for my micrognathia. I have had several surgeries, and I am having surgery April 11 for my webbed toes and my hand. I am seeing cardiology for my pulmonary stenosis. Urology is for my kidneys. I also see audiology because I have severe hearing loss in both of my ears. I wear hearing aids but might wear cochlear implants in the future. I follow up with a developmental doctor to make sure my feeding is going well and I'm growing the way I should be. I also see immunology for my weak immune system.

I have been home since Feb. 10, 2022. Even though I have been in the hospital several times with pneumonia since my lungs aren’t as developed as they should be, I am a very happy baby. I have two older brothers and an older sister who absolutely adore me.

Archer Ruzic, as told by his mom, Olivia Ruzic

We chose our second son’s name when I was only two months pregnant. My husband, Jesse, is fascinated by both history and architecture. He loved the symbolism behind the gothic arch, which was designed to point up to God. We also had our first kiss under an arch in Chicago on the college campus we attended. So, he suggested the name Archer for a boy, and I liked it immediately. WIth one caveat, “I don’t want to call him Archie, just Arch.”

After my anatomy scan at 19 weeks, I was called back because Archer’s head was measuring too small. The follow-up ultrasound revealed no problems or concerns, except that he might be a smaller baby. My doctors were not concerned about his growth or any markers, so no additional testing was recommended. I still couldn’t shake the feeling something was off with my pregnancy, but I chalked it up to nerves.

He was born after a relatively easy delivery on March 8, 2020, when we were living in Michigan. He was nearly 9 pounds and beautiful with a thick head of dark hair. But he didn’t cry and as the moments went on, it became clear he wasn’t going to start crying on his own. He was rushed to the NICU and treated for severe pulmonary hypertension.

More and more issues were revealed over time. His diaphragm was in the wrong place, his kidneys were misshapen, and at 3 days old, he developed a life-threatening coarctation of the aorta that required an immediate open-heart operation. We were amazed as his heart surgeon sketched out the aortic arch – it looked like a tiny gothic arch. His surgery was called an “arch reconstruction,” and we joke that from that day on. our lives were reconstructed in powerful ways.

He came home and began to heal alongside us and his big brother, Jack, but he had to have multiple follow-up procedures, and he struggled to eat by mouth.

At nearly 6 months old, he was still using an NG tube, and pulling it out was becoming his favorite hobby. During surgery to place a G-tube, he suffered a thalamic hemorrhagic stroke.

People all over the globe prayed for him. He survived and by the next week, he was moving his arms and regaining strength in his face to smile. A few weeks later, the stroke specialist who looked at his imaging was amazed, “It's remarkable. Any adult who sustained a brain bleed this size would have gone into a coma. He should not be moving or interacting the way he is. Not only that but he doesn’t have any signs of swelling on the brain or spinal fluid leakage. Remarkable.”

After his stroke, we chose to relocate to Indiana to get to the bottom of Archer’s health issues. Specifically, to get him into Riley. The first month we lived in Indy, Archer developed infantile spasms, a serious progressive seizure disorder. He was quickly treated with ACTH, an aggressive steroid treatment.

While we were treating him for the spasms, Riley called with results from further genetic testing they’d done. Archer tested positive for both Kabuki Syndrome, a rare genetic syndrome that causes both developmental and medical challenges, and RYR1, a muscle mutation both Jesse and I were carriers of. We didn’t know we were carriers because our first son was both healthy. He was also discovered to have primary immune deficiency, so he gets plasma infusions weekly at home.

Archer lives up to his name. All the hardships he has overcome and his continued joy truly do point up to God. In spite of his struggles, he is truly a happy boy. He loves being tickled and playing with brightly colored toys. He gets a kick out of his high-energy brother, who loves to make him laugh. His laugh is the most beautiful sound in the world. We are truly thankful for him and all the ways he has reconstructed our lives.

Aurora Brown, as told by her mom, Samantha Hinman

After 11 months of trips in and out of doctor appointments, Aurora was referred to the genetics team at Riley Children’s Health.

The first time we met Dr. Mary Stuy, we felt like we had known her for years instead of minutes. By the end of the visit, Dr. Stuy had Aurora's diagnosis figured out, a diet change to best suit her, and labs drawn to verify that Aurora had Pyruvate Dehydrogenase Deficiency (PDH), a rare disease of carbohydrate metabolism that affects fewer than 1,000 people in the U.S.

Symptoms include poor feeding, rapid breathing and progressive neurological issues, including poor muscle tone, delays in motor development and poor eye tracking.

The genetics team at Riley was so supportive. Katie Schumacher, a genetic counselor, even reached out a few days later to check and make sure that we did not have any further questions. She did such an amazing job explaining Aurora's diagnosis and was extremely patient in answering all of my questions and concerns.

Nine years later, Aurora is still with us, strong as ever. I truly believe that without the genetics team at Riley, that may not have been the case. Their knowledge and quick response gave me back my daughter. I am truly grateful for them.

Compiled by IU Health senior writer Maureen Gilmer, mgilmer1@iuhealth.org

Dr. Olivia Cummings is a 26-year-old neurology resident with the IU School of Medicine. She is currently on rotation at IU Health Methodist Hospital, but she grew up at Riley Hospital for Children, where she and her family received treatment and support for a rare disease called PKU. In fact, Dr. Cummings continues to see her healthcare team at Riley.

Phenylketonuria (PKU) causes an amino acid called phenylalanine to build up in the body. In the United States, PKU occurs in 1 in 10,000 to 15,000 newborns. Most cases of PKU are detected shortly after birth by newborn screening. Nutrition-focused treatment is started promptly.

In recognition of Rare Disease Day (Feb. 28), we invited Dr. Cummings to share what it’s like to live with a disorder that would have life-altering consequences if she did not follow a strict low-protein diet.

Question: What are your earliest memories of Riley and living with a rare disease?

Dr. Cummings: My earliest memory is probably the dietitian who used to see me. Her name was Dolly, which I just loved as a 5-year-old girl. She would always give me lots of stickers and samples of low-protein foods that were new on the market. In school, when you were the only person who brought their lunch and the food looked weird and people were asking questions and wondering why you were drinking what they called baby formula, certainly it didn’t feel good. The older I got, the more comfortable I got explaining myself. By the time I got to high school, I had a group of friends who also started bringing their lunches and thought it was fun to try new foods. So, it does get better.

Why are you on a low-protein diet, and why is nutrition so important?

PKU affects amino acids and can interfere with cognitive development and mobility unless there is proper intervention and nutrition. Protein is made up of 20 different amino acids, one of which is phenylalanine, which my body cannot break down. It is toxic to the brain. So, avoiding protein is absolutely necessary, but at the same time, everybody needs protein to grow and survive. The way I get around that is by drinking specialized formula, which contains all the other amino acids. For example, instead of eating an egg with all 20 amino acids, I have to drink formula (32 ounces a day) where I get the 19 amino acids that my body is able to process. The rest of my diet consists of mostly fruits and vegetables and low-protein foods. The majority of my food that doesn’t come from the produce aisle comes from a freezer box somewhere in New Hampshire.

If you did not follow a strict diet, what would be the ramifications?

I don’t think we would be able to hold a conversation right now. I’m not sure I would have the dexterity to walk or would even still be alive. Some people with PKU way back when would have debilitating seizure disorders that would kill them in childhood. If you survived to adulthood, you would usually have cognitive impairment, intellectual disability, and mobility issues.

PKU is one of the best examples I can think of in terms of medical advancement really changing the outcome of a person’s life. If I had been born 60 to 70 years ago in the same town at the same hospital, I would not have the life I have today. And that is all due to newborn screenings and the diligent work of the dietitians and the genetics team at Riley. There is no stronger impact that I’ve seen in medicine as a medical student and as a resident than the one I’ve been dealt myself.

How does your Riley team support you today?

Dr. Bryan Hainline (Riley Medical & Molecular Genetics) diagnosed me when I was born, and he's still my doctor. The dietitians at Riley are an amazing, incredible group. As I’ve been transitioning into residency, I’ve been going to Riley more often to get more support. They’ve given me lots of ideas and suggestions for how to cope with the long hours and not being able to get in a good meal. This last year, in particular, has been more difficult because of the formula shortage, so I’ve been relying on the dietitians a lot to help me get formula. It’s a prescription formula – you can’t buy it at the store. Without my formula, I would not be able to function.

What message do you want to share, either about PKU or rare conditions?

I think we – the medical community and the general population – tend to overlook rare diseases. We forget that people with rare diseases have a lot of specific challenges related to not having funding or attention from insurance companies and drug companies to not only develop drugs that help treat conditions but also to get health insurance coverage. My formula costs $40,000 a year (currently covered by insurance at 80%), and the only treatment on the market for PKU that I might benefit from is $250,000 a year and requires daily injections. The other treatment I tried and did not respond to, so I’m fully focused on diet. PKU is just one disease that can really affect people’s lives, but there are thousands of other rare diseases that are absolutely devastating, and we just don’t have the general awareness to be able to help people the way they need to be helped.

Outside of work, Dr. Cummings, who recently bought a house with her fiancé (also a medical resident), enjoys home-improvement projects, gardening, and reading historical fiction.

Khloe Hilton is a familiar presence at Riley Hospital for Children. The 12-year-old sees more than a dozen specialists currently – 18 in all since she was a baby, by her mom’s count.

When she was born in Noblesville, she seemed pretty typical, Megan Hilton said of her daughter. But things began to change when she was a toddler.

That’s when she suffered her first seizure.

“We were at a park, and she was spinning on a ride when she dropped to the side, stiffened up and started convulsing,” Hilton recalled.

The episode lasted about two minutes, and Hilton called her pediatrician and took Khloe to IU Health North Hospital to be checked out.

That would be the first of many seizures, gastrointestinal issues and countless trips to Riley Hospital for Children at IU Health North and Downtown Indianapolis.

First diagnosed with generalized convulsive epilepsy, Khloe was under the care of Dr. Mandy Harris before the Riley neurologist passed away in 2017 from complications of type 1 diabetes.

Joining her in caring for Khloe was Dr. Laurence Walsh, a Riley neurologist and geneticist.

It was Riley geneticist Dr. Molly McPheron who would ultimately diagnose Khloe last year with a rare disorder called SCN8A that has only been recognized for the past decade.

SCN8A is known to affect fewer than 1,000 people worldwide. It can cause severe epilepsy, autism, developmental delays and other medical challenges. The gene SCN8A was isolated in humans by Dr. Michael Hammer, a geneticist who found the gene in his own daughter, Shay, soon after her death in 2011.

For Hilton and her husband, Scott, it was an answer at least. Before the diagnosis, they didn’t know what was causing Khloe’s issues. Now, they feel a sense of community with other parents of special-needs children, specifically those with SCN8A.

“When Khloe was 2, this test wasn’t out there. We had never heard of this,” Hilton said. “A lot of doctors hadn’t either. We know what we’re fighting now, so we do have hope.”

In the United States, a disease is considered rare if it affects fewer than 200,000 people, according to the Broad Institute. More than 7,000 diseases fit that bill, with about 25 million Americans living with a rare disease. The majority of these are genetic.

Rare Disease Day (Feb. 28) is an international event to raise awareness about the impact of rare diseases on patients’ lives and to emphasize the need for research.

Hilton and other parents like her have found support and education through the International SCN8A Alliance (https://scn8aalliance.org)and the Cute Syndrome Foundation, a name that has become synonymous with SCN8A. The Cute Syndrome is how one parent referred to her child’s disorder when there was no official name.

In the decade since the genetic disorder was identified, the Cute Syndrome Foundation has worked to advance awareness and research. In fact, Dr. Harris was honored with one of the first CUTIE Awards (Champions for Understanding, Treating, Investigating and Empowering those with SCN8A) in 2016.

Joining the group’s Facebook page gives parents like the Hiltons a “safe place” to ask questions and to vent when they’re having a bad day.

“It’s helpful to have people who understand what you’re going through,” Hilton said. “Unless you live the life of special needs or medically fragile children, it’s hard to understand or empathize.”

Unlike some people diagnosed with SCN8A, Khloe can walk (though she tires easily), and she is verbal to a point.

“She has speech delays, but she can let you know what she wants and doesn’t want. That’s a good and bad thing,” Hilton said with a laugh.

She goes to school three days a week, for about an hour each day, her mom said, though they are working toward longer periods in school.

Dr. Shamaila Waseem follows Khloe for gastroenterology, and Khloe is also followed by cardiology, urology, psychology, genetics, orthopedics, endocrinology, ophthalmology, developmental peds and dermatology, among others.

Needless to say, Khloe, who at 12 is already 5 feet, 5 inches tall, spends quite a bit of time at Riley. She tolerates the appointments fairly well, though she can be moody at times, her mom said.

“The doctors are great at working with her and being patient.”

But what she loves most is hanging out with the Child Life team, who keep her busy with videos, crafts, games and activities.

“She is deep in Riley,” Hilton said. “We bought our house four years ago to be closer to Riley, closer to the team that takes great care of her.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

To look at their babies now, just six days after birth, Rebekah and Daniel Koehn can hardly believe their eyes.

Two precious little girls, born seconds apart and weighing over 3 pounds each.

Hayleigh and Rachel Koehn are tiny miracles really, delivered six weeks prematurely after a monthslong fight to keep them alive.

There was a time, just a few months ago, when Rebekah and Daniel weren’t sure they would reach this happy day.

“At first there was a lot of crying and feeling overwhelmed,” Rebekah said. “We weren’t given good chances for both babies to survive. But we believed God had this handled.”

Strong family support and a solid medical team behind them has made the journey easier, she added.

The Maternal-Fetal Medicine team at Riley Children’s Health managed the first-time mother’s health and that of her twins from the time Rebekah was 19 weeks’ pregnant – first performing “lifesaving” surgery in the womb, then delivering the babies safely via Cesarean section.

The laser surgery to treat a rare condition called Twin-to-Twin Transfusion Syndrome (TTTS) was a first for Riley, according to Dr. Mara Nitu, chief medical officer, who spoke briefly at a news conference this morning attended by hospital leadership, as well as physicians and nurses involved in the Koehn family’s care.

“It is a great joy to share in this historic moment for Riley Hospital,” Dr. Nitu said.

The births themselves were captured on video and in photos in a crowded surgery suite in the Riley Maternity Tower, where multiple teams of specialists were on hand to assist.

It was at a 19-week ultrasound when the Koehns, of Veedersburg, Indiana, learned that their babies were suffering from TTTS, as well as Selective Fetal Growth Restriction.

TTTS can affect identical twins or other multiples. It occurs in 10% to 15% of pregnancies where twins share one placenta (monochorionic) and a network of blood vessels that supply oxygen and nutrients essential for development in the womb.

With TTTS, there is an imbalance in blood flow to both babies. One twin (called the “donor” twin) gives too much blood to the “recipient” twin.

Left untreated, one or both twins likely would not survive.

Dr. Hiba Mustafa is a fetal surgeon at Riley who intervened in Rebekah’s pregnancy at 19½ weeks and again at 21 weeks, both times performing a delicate laser surgery to save the tiny identical twins.

The procedure involves inserting a small fiber optic scope equipped with a tiny camera inside the uterus, mapping the blood vessel connections to see exactly where the twins were sharing blood back and forth unevenly. Once the connections are found and identified, a tiny laser burns those connecting points, allowing both babies to grow more independently.

“Even though this is a magical, lifesaving procedure, it can come with a long list of complications, including early labor,” Dr. Mustafa said.

For the past 20 years, the treatment for TTTS is laser ablation of the blood vessels that connect both twins, but until recently, Indiana patients had to go out of state for interventional surgery, explained fellow fetal surgeon Dr. David Streitman.

With the development of Riley’s fetal intervention team over the past year, these services are now closer to home, benefiting mothers and babies, because timely referrals for care can be the difference between life and death.

In Rebekah’s case, she first saw Dr. Mustafa on a Friday, and she was in the operating room the next day for the first laser ablation.

After a second laser treatment and careful monitoring, Rebekah, a first-grade teacher who took a leave of absence from her job, was able to make it to the agreed-upon delivery date of Feb. 16, six weeks before her due date.

“We decided 34 weeks is the sweet spot,” Dr. Mustafa said.

The babies’ lungs and brains are mostly developed by that point; waiting any longer could put both babies and mom in jeopardy.

Neonatologist Dr. Melinda Markham, medical director of the Riley Fetal Center, reports that both babies are doing well today in their adjoining rooms in the Riley Maternity Tower NICU.

“They just need to get bigger, be able to maintain their temperature and learn how to feed, and they’ll be home in a flash hopefully.”

Earlier today, the proud new parents were tending to their newborns in the NICU, dressing them in matching preemie outfits that proclaimed: “Hi, I’m new here.”

The girls may look identical, but their parents already can tell them apart. Rachel has mom’s ears, while Hayleigh has dad’s, they said.

Daniel, who described waiting for the birth as something akin to pre-game jitters back in high school, said it doesn’t quite seem real that he’s the dad of twins yet.

“It will feel real when we get home,” he said. “We can’t wait for that day to come.”

“It’s hard having babies in the NICU, but they’re doing well,” Rebekah said, adding that they both are grateful for the care they have received.

“We love Riley. It’s a huge relief to be here.”

Dr. Mustafa said the state of Indiana is fortunate that Riley has embraced the fetal intervention program.

“It’s a huge step, and you need a lot of support – nursing, physicians, leadership,” she said. “Everyone has been up to the challenge.”

As Rebekah and Daniel listened, Dr. Mustafa expressed her gratitude to the couple for trusting the Riley team.

“We thank them for the honor of delivering both babies safely. She (Rebekah) is sitting here just days after delivery looking like a super mama.”

Photos and video by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

When Lane Veach said he wanted to be part of a team, he wasn’t thinking about the team at Riley Hospital for Children that has kept him alive for years.

Make no mistake, he is grateful to that team of doctors, nurses and specialists because they helped him get to this day.

He recently joined the diving team at his Bloomington middle school – something that wouldn’t have been possible without the care he has received for pulmonary hypertension.

Dr. Michael Johansen, a cardiologist and co-director of Riley’s Multidisciplinary Pediatric Pulmonary Hypertension Program, works with pediatric pulmonologist Dr. Gregory Montgomery and nurse Tisha Kivett to make sure 14-year-old Lane and other kids like him get the comprehensive care they need.

Pulmonary hypertension happens when the pressure in the blood vessels leading from the heart to the lungs is too high, damaging the lungs.

“He couldn’t walk up a flight of stairs,” Alan Veach said of his son during a visit to Riley last week. “He used to have to ride in a wagon here because he couldn’t walk from the car. He would vomit after eating because his heart was so enlarged and under stress.”

Lane’s birth mother died from the same disease shortly after he was born, but Lane was not diagnosed until he was 4. He was transferred emergently from Bloomington to Riley a decade ago when he began struggling to breathe.

Dr. Anne Farrell was the cardiologist on call that January day in 2013, and she became a lifeline of sorts for Alan and wife Jennifer.

“She was our rock here for quite some time,” Veach said.

There was no pulmonary hypertension clinic at Riley at the time, but Drs. Montgomery and Johansen collaborated to bring pulmonology and cardiology together to treat Lane and others.

By early 2014, Lane’s health was deteriorating rapidly. He had to tote an oxygen tank with him at all times in a little suitcase on wheels – to preschool, the store, even to the beach.

Riley collaborated with doctors at other hospitals, first evaluating the then-5-year-old for a heart/lung transplant, before the decision was made to have him undergo a Potts shunt, a novel procedure that had been studied in Denmark and performed only a couple of times at a St. Louis hospital.

The operation involves a side-to-side connection from the left pulmonary artery to the descending aorta, diverting some of the high-pressure pulmonary blood so it would not have to move through damaged lungs.

That surgery in St. Louis in 2014 saved Lane’s life, his dad says.

Since then, he’s been able to do away with the portable oxygen, as well as a continuous pump that delivered drug therapy intravenously. He now takes three oral medications multiple times a day, in addition to an aspirin, which allows him to be more active.

The eighth-grader returns to Riley every six months for blood tests and an echocardiogram to test his heart function, but otherwise, he lives a fairly normal life – going to school, hanging out with friends and playing video games.

He might not be able to swim the length of the pool at school, but he can participate on the dive team, and that’s enough for right now.

For his 14^th birthday, he brought in party hats to celebrate with his dream team at Riley – Dr. Johansen, Dr. Montgomery, Dr. Farrell and nurse Kivett.

They have seen him through the worst but always seem to bring out his best. They are like family, both father and son say.

“Thanks for always being willing to talk with us, to laugh with us. Thanks for always being there when we needed you,” Veach said.

“Thanks for giving me a second chance,” added Lane, who supports Riley by speaking at Bloomington South’s Riley Dance Marathon.

It’s something that Lane’s dad feels strongly about – raising awareness of pulmonary hypertension and advocating for more research and more funding to improve access to care for everyone.

“There are never enough ways to say thanks to our team,” he said. “Any time I can shine a light on their program so they can get more funding, more recognition, so that more people have an opportunity to understand how special they are, I will always say yes to that.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

It was a pleasant Sunday evening, just after a family dinner, when 10-year-old Emery Johnson asked her mom if she could go for one more run in the neighborhood.

She’d already run twice earlier that day, about a mile each time, but she was eager to go out again. Emery had just joined her school’s running club.

She had barely made it past the four-way stop at the entrance to the cul-de-sac where she lived when she collapsed, her parents, Travis and Jessica Johnson, said.

If not for the attention of another child riding her bike nearby and a neighbor who is a nurse, Emery might not have made it home. The neighbor child alerted Emery’s parents, as the nurse who heard the commotion sprang into action, beginning CPR in the street where Emery had collapsed.

The Fort Wayne family would find out later that Emery suffered from an undiagnosed congenital heart defect, AAOCA, or Anomalous Aortic Origin of the Coronary Artery.

Riley Children’s Health heart surgeon Dr. Mark Rodefeld explains it this way: “She had a coronary artery that was running in the wrong direction. It was running between two bigger blood vessels, and the course of that artery put it at risk for getting smashed between the two bigger blood vessels.”

Even though Emery had always been active, it was only that Sunday evening back in August 2021 when her heart defect was revealed.

As she ran, the young girl’s coronary artery was getting pinched between the two larger blood vessels – enough to cut the blood flow to her heart and trigger an arrhythmia.

“People can live with these defects and not know,” Dr. Rodefeld said. “They are rarely diagnosed until someone has a sudden death episode.”

The difference here between life and death was fast intervention, he said, likening it to the experience of NFL player Damar Hamlin, who suffered sudden cardiac arrest on the field during a game last month.

“He didn’t have the same heart problem she did, but a quick response makes the difference between life and death.”

Hamlin received immediate medical attention, including revival with an AED (automated external defibrillator), and his life was saved.

Emery received CPR from a nurse who lived nearby, with support from a family member, before paramedics arrived.

As shocking as it was, Jessica Johnson said, “it happened in the right place, at the right time, with all the right people around.”

Paramedics connected her to an AED but did not have to use it, Johnson said, though Emery coded twice more, the last time just after arriving at a hospital in Fort Wayne.

Not surprisingly, tests revealed a problem with her heart, and hospital staff arranged for her to be taken by ambulance to Riley Hospital for Children in Indianapolis, recognized regionally (best in the Midwest) and nationally (sixth in the nation) for its pediatric cardiology program by U.S. News & World Report.

Emery arrived in the early morning hours of Aug. 30. She was sedated and on a ventilator for several days, while doctors waited for her body to get stronger.

During her time at Riley, Emery marked her 11^th birthday with her siblings gathered on the other side of windows atop the Riley parking garage (due to Covid and flu visitor restrictions).

Heart Center nurse Julia Doyle Burgess remembers celebrating with the young patient over cheesecake, and Emery connected with her nurse so much that she named the bear she received in the hospital Julia Bear.

“Impacting each other’s lives is an unexpected opportunity that comes with being a pediatric nurse on the Heart Center at Riley,” Burgess said. “When working so closely with a patient and their family, we are able to turn a dark time into a time to find inspiration and meaning to life.”

Burgess said she received a card from Emery and her family saying that Emery wants to be a nurse at Riley someday because of her.

“My heart was filled with joy when I received that card. She is such a sweet little girl!”

On Sept. 14, Dr. Rodefeld, whom Emery’s parents call a “miracle worker,” performed open-heart surgery to repair Emery’s coronary artery defect. Five days later she was headed home.

The scar she carries is a reminder of her ordeal but also a reminder that she is a survivor, something Emery’s mom encourages other parents to embrace.

“Emery is extremely proud of her scar because it’s something that symbolizes how strong she is and how tough a battle she went through and won.”

The experience has left a lasting mark not just on Emery, but on her parents as well.

“Appreciate the gift of your child,” Travis Johnson said. “Never take them for granted. Tell them you love them, hug them, support them. We are lucky to still be able to do these things because we had a neighbor who was trained in CPR, a fire station just around the corner … and wonderful surgeons, doctors and nurses who all played a part in keeping our child alive.”

Emery, now 12, continues to get regular checkups to make sure her heart function is still strong, and her three younger siblings were tested to see if they carried the same defect, but they do not.

In September, Emery marked her one-year “heartiversary,” and though she has not returned to running, she is playing volleyball and taking dance lessons, her mom said.

In fact, there is no reason she can’t live a normal life going forward, Dr. Rodefeld said.

It was a freak thing that happened, he said, but the quick response made all the difference.

“People can live with these conditions and not know,” he said. “When an otherwise healthy young person collapses, especially in sports, a good number are related to this abnormal coronary artery condition. Some people can live their whole life and not have a problem. Some people have sudden cardiac death.”

As medicine and testing continue to improve, more of these conditions are being diagnosed, even in people who’ve never had an issue, he said. Emery was lucky to be in the right place with the right people around to save her life. “It’s a pretty amazing story.”

The Johnsons are now trained in CPR and encourage others to do the same. Contact the American Red Cross to sign up for a class.

The Hallmark Channel couldn’t have scripted it any better.

Paging Dr. Valentine, please report to the Heart Center.

Dr. Kevin Valentine has been tending to the hearts of young patients as an ICU physician in Riley Hospital for Children’s cardiovascular intensive care unit since 2014.

At this time of year, he’s used to the jokes and to seeing his photocopied image plastered up and down the hallways of 3 East next to the hand sanitizers.

It’s all in good fun, and the kids certainly get a kick out of it, even making Valentine’s for Dr. Valentine, like 2-year-old Junior Aylor did in the CVICU on Monday, the day before Valentine’s Day.

But Dr. Valentine didn’t go into the field of cardiac medicine because of his name. He went into medicine to help people, and for him, the heart and all of its intricacies is his passion.

That’s why working at Riley (the best in the Midwest for pediatric heart care, according to U.S. News & World Report’s most recent rankings) means so much to him and the team that surrounds him.

As associate medical director of the CVICU, he is one member of a team that works with cardiovascular surgeons and cardiologists to take care of medically fragile kids. Once they graduate out of the ICU, they go to the step-down unit, where cardiologists or neonatologists will coordinate their care until they go home.

“We have an outstanding multidisciplinary team,” the physician said. “Outstanding nurses, nursing leadership, director of pharmacy, a dedicated nutritionist, respiratory therapists … a big team of people who could probably go anywhere in the country and they choose to stay here at Riley and work in this Heart Center.”

Carrie Davison leads the nursing team as clinical manager of the CVICU, where the sickest patients stay – those with congenital or acquired heart disease who are too sick to be home, and those recovering from heart surgery.

“I appreciate and love this team,” Davison said. “Since we opened the CVICU in 2014, we have moved up in the U.S. News rankings from No. 29 to being in the top 10 for the past four years.”

Currently, Riley’s cardiology program is ranked sixth in the nation and No. 1 in the Midwest.

It is a feat made possible only through hard work and dedication, she said, with a focus on exceptional care and a strong culture of safety. Dr. Valentine also chairs the Heart Center Quality and Safety Council.

“These patients are so vulnerable, and it’s important to focus on what we can control, follow evidence and best practice, and do our best to help these heart kids have the best outcome possible,” Davison said.

Kamryn Silvey just celebrated her 6-month birthday, all of that time spent at Riley, though she is now on the step-down unit of the Heart Center after recovering from multiple surgeries for heart defects, including tetralogy of Fallot.

Her mom, Holly, and grandmother, who had her all decked out in Valentine’s Day bows and hearts Monday, are hoping to bring her home in the next month or two.

“This place has been wonderful,” they said, as Kamryn made a pretty heart-shaped Valentine with her tiny feet covered in paint.

“She is a heart warrior for sure.”

Courtney Lyon is the child life specialist on the Heart Center, and she was busy this week, bopping from room to room to see who wanted to make Valentine’s Day crafts with their kiddos.

For her, the entire month of February is special because it is Congenital Heart Defect Awareness Month.

“It’s about celebrating heart warriors and the strength they have. And it’s about celebrating the love our unit has and the love we share for our patients and families,” she said.

“It’s about loving who you are and what makes you unique and what makes our heart warriors unique,” Lyon continued. “That’s what makes me appreciate not just Valentine’s Day but the whole month of February. Our patients feel really special because they are. And they get a whole month to celebrate.”

So while Valentine’s Day is certainly about more than one doctor with a sweet name, this Heart Center team can’t help but celebrate him today, too.

“Dr. Valentine is a wonderful physician, mentor and leader,” Davison said. “He is kind, compassionate and honest in his interactions with his patients and families. We love having a formal day to really celebrate him.”

For the physician, however, this day – like every day – is all about the patients in his care and the goal of getting them well enough to go home as safely as possible.

“Babies develop better outside the hospital,” Dr. Valentine said. “Kids are not supposed to live in the hospital with all the bells and whistles, all the disruptions, all the strangers, all the risks for infection.”

That’s why he focuses intently on quality and safety, refining processes to improve outcomes for all patients.

“These kids are fighting for their lives.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Kayley Wilson thought she might have to give up on her dream.

The champion gymnast from Carmel has been tumbling, vaulting and mastering the balance beam and trampoline since she was just 3 years old, but last year, at the tender age of 13, she couldn’t get past the pain.

Her goal of someday making the USA National team for gymnastics was slipping through her fingers.

That is, until she saw Riley Children’s Health advanced practice provider John Doss at a walk-in ortho clinic at IU Health North Hospital. Doss is a physician assistant in pediatric orthopedics, splitting his time between North and Riley Downtown.

For the first time, Elonda Wilson said, her daughter felt like someone was really listening to her when she described the pain she was feeling, first in a wrist, then in her foot.

“Every appointment we’ve had with him has been amazing,” Wilson said. “Kayley is very shy, but she opens up and talks to him. I learn a lot about her injuries from his questions.”

The most important thing he does is listen, Wilson said. And he treats her daughter with respect.

“He’s very attentive, and when she talks, he takes the time to listen and give her feedback and give me feedback.”

Doss, 26, was an athlete in college, so he can relate to those who are trying to get back into their sport, whether it’s a team activity or a weekend passion.

“Everyone is on their own path,” he said. “I think everyone’s story is unique and interesting, so I really like to get to know the patient, figure out what their goals are and just really listen.”

Bottom line, he said: “Our goal is for her to return to what she loves – safely and at a reasonable pace.”

Kayley, now 14, has been taking a break from organized gymnastics to help her body heal, but she reinjured her foot recently when she did a gymnastics move at home, her mom said.

“Dr. John,” as Kayley calls him, put her in a boot for four weeks, and she is now in physical therapy. Once that is complete, they will re-evaluate her foot to see if it has properly healed.

Wilson had put her own foot down after her daughter’s last injury and said, “no more gymnastics.” But now she and her husband, Cedric, are willing to wait and see.

“I told her, ‘I don’t make deals with kids, but kid, let me make a deal with you,’” Wilson laughed. “If you will stop causing injuries to your body, we will let you go back to gymnastics.”

Kayley, who has been a state champion in at least one event in trampoline and tumbling since she was 7, hopes to return to the gym soon to continue her quest to become an elite gymnast at the national level.

“Dr. John” and the ortho clinic at IU North in Carmel see walk-in patients Monday through Friday from 9 a.m. to 3:30 p.m.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Dr. Alvaro Tori feels so blessed in life – personally and professionally – that he can’t quite talk about it without becoming emotional.

The pediatric critical care physician apologizes but then, just as quickly, recovers with these words: “We walk so fast in life, sometimes we forget to feel.”

Dr. Tori feels deeply – for his patients and families, his colleagues, his community, his family, and especially for those who feel unseen.

For 15 years, he has cared for children in the pediatric intensive care unit at Riley Hospital for Children, nearly 20 if you count his time in residency. He is also a faculty member with the Indiana University School of Medicine and senior associate dean for diversity affairs for the School of Medicine.

And these are but a few of his identities, he says.

“I am very purposeful in saying who I am. I am a physician, a gay male, a Latino, an immigrant, a husband, a father. These are the identities I bring with me and how I see the world. This is who I am.”

Dr. Tori recently sat down for an hourlong interview, touching on his childhood, his path to IU Health, his approach to patient care, the sense of duty he feels toward marginalized populations, the joys of being “Papi” to his two children, and how learning to knit during the pandemic helped calm his mind.

LEARNING FROM HIS FATHER

A native of Lima, Peru, he learned about medicine from his father, a respected neonatologist who occasionally took a young Alvaro with him on hospital rounds.

“I remember seeing how grateful people were to him,” Dr. Tori said. “I wanted to create that same level of impact. Medicine was a path to help me do that.”

His dad, who passed away two years ago from COVID-19, taught him responsibility, how to give 100% and to be better every single day.

“My dad was building the professional side of me, and my mom was building the emotional side of me. I think they did a good job together.”

His mom, who still lives in Peru, taught him to always be grateful, no matter how much you have, he said. To say thank you. To be polite and compassionate.

“Represent us well,” he recalls her telling him. “Always remember that kindness will open a lot of doors for you.”

The lessons from both of his parents are deeply rooted in the physician, who completed medical school in Peru, before coming to Indianapolis to interview for a residency post at IU School of Medicine.

His humility sometimes gets the better of him, and he says he fully expected to be passed over by IUSM, the largest medical school in the United States. In fact, his sights were set on Miami.

A CHANGE IN DIRECTION

Instead, he left his interview here – the first of half a dozen with schools around the country – with a feeling that this was where he belonged.

“I came here the first time Jan. 7, 2003, and it took very few hours to know that this was going to be my home. The energy, how they treated me … they valued who I was, and they were purposeful, talking about why this place was right for me.”

Twenty years later, he remains high on both the school and the hospital system.

“I adore this place. There are days that are tougher than others, but overall, this is the place where I find joy. I bring the joy and the pain home, so I want to be in a place where I have that balance. That helps me be better at home.”

At home are husband Toby Ringle (among the kindest human beings he has ever met, Dr. Tori said) and the couple’s two children, ages 9 and 10. It’s a family the physician could only dream about before coming to Indiana.

Coming from a very religious household, a socially conservative country, he says he struggled to reveal his full self for years.

“I didn’t know if I had a future as a physician, as a pediatrician, as a human being.”

He found everything he was looking for in time, and with it all comes a feeling of peace mixed with responsibility, the latter both to his patients and the larger community.

EQUITY AND INCLUSION

As senior associate dean for diversity affairs for IUSM, he advocates for diversity, equity, inclusion and justice in programs and in people, whether it be in recruiting, retention, promotion or training in cultural humility and more – all designed to Improve the climate for those from marginalized backgrounds, he said.

“I’m proud of that work. I know we have many barriers, but it’s a job that needs to be done, and it brings me joy.”

On his lapel, he wears the Caduceus medical pin in the colors of the rainbow as a welcoming sign for any LGBTQ patients, families, students and staff.

He acknowledges that being so transparent with his story might expose him to hurtful comments, but he keeps his eye on the bigger picture.

“For people who don’t think it’s important for me to say who I am, they need to check their privilege, their experiences in life. It’s important to me to bring my full self because you never know who’s watching, who’s reading, who might feel they can’t reach their full potential because of who they are. I am welcomed in this space because of who I am.”

EARNING FAMILIES’ TRUST

On the clinical side of things, he says becoming a parent has made him a better physician.

That patient he treats could be his child – that parent could be him, he said.

“How would I like to be spoken to? There is not a disease lying on that bed, there is a human being, someone’s loved one, someone’s child. That makes me work harder; that makes me think harder. That makes me spend more quality time, not only with the patient but with their family members, their caregivers to share the information I have, but also to listen to them – their concerns, their struggles, their barriers.”

He believes that connection sometimes is missing in healthcare, that clinicians don’t always provide that space for patients and family members “to trust more, to share more, to know that we care more.”

Being a physician also makes him appreciate being a parent more. Life and death are part of his job, so outside the hospital, the marathon runner and tennis player is active in his kids’ school, in keeping them connected to his homeland and in teaching them how to knit, a hobby he took up during the pandemic to relax his mind and honor a past boss and mentor.

“I know that I can lose everything in one minute, so when I go home, I hug my kids, and I am more patient. The small things that bug me become smaller and smaller. I value what I have more because I know that I could lose it.”

“PEOPLE ARE WATCHING”

He knows well the fear in a parent’s eyes when their child is critically ill.

He tells the story of an encounter years ago when he was leaving a grocery store, pushing the cart to his car.

“This story always makes me cry. I heard my name in the distance, Dr. Tori, and this couple rushed to me. They hugged me, telling me they are so and so’s parents and that I had saved their child’s life.”

That encounter changed his life.

“That’s why we have to pay attention, because people are paying attention to how much you care for them, how you treat them. People are watching.”

Justine Atkinson was watching. Her toddler spent several days in the PICU over Thanksgiving, including time on ECMO (extracorporeal membrane oxygenation) after the boy choked on a peanut.

She remembers the compassion Dr. Tori and the rest of the care team showed her family through some of their worst days.

Mattie Atkinson is now home and healthy, but the frightening incident is seared into his mom’s memory and heart.

“I feel like I’m leaving part of my heart here,” she said at the time. “The way they loved us and loved him, I couldn’t imagine being anywhere else.”

Leading with empathy, kindness and compassion helps him take better care of patients and families, Dr. Tori said.

“The more space I create for trust, the more they will share, the more questions they will ask, the more they will understand, and the better care we will provide.”

Dr. Riad Lutfi, a colleague of Dr. Tori’s in the PICU since 2012, says Dr. Tori has put patient and family care first throughout his time at Riley, addressing health inequities inside and outside the hospital.

“Being a good doctor starts with being a good human,” Dr. Lutfi said. “And Alvaro takes those principles outside of medicine into the community. I can’t ask for a better friend, colleague and human to work with.”

STILL LEARNING FROM OTHERS

For his part, Dr. Tori says he is grateful to those who have seen something in him that he sometimes struggles to see in himself, whether that be his skills as an advocate for marginalized populations, his ability to connect with medical students in the classroom or the impact he has on patients, families and team members every day.

And he acknowledges watching others closely, looking for qualities they bring that he can steal, he says, things he wants to see in himself as he continues to grow as a physician, a teacher, a husband and a father.

“I will never be perfect, but that’s why I like to watch other people to see what I am missing.”

So, he surrounds himself with people he can learn from, he says. Riley Hospital and IU Health allow him to do that.

“When patients and families are home and healed, I want them to look back not on the fear they had, but with the feeling that they trust this place, that they were treated with kindness, with respect, with compassion. This is what healthcare is about; this is what Riley Hospital is about; this is what IU Health is about,” he said.

“I want to be in a place where I feel that I’m part of something big, even if I am a tiny, tiny part of it. I want to be in a place that shares the same values that I have, and this is the place that gives me that. Every day that I walk away from this building, I know that through my administrative work, or clinical work or educational work I was able to make a difference for at least one person.”

Those lessons his mom taught him as a child continue to guide him. And she was right, he believes. Treating people with kindness and respect has opened doors for him.

Now, it’s a lesson he imparts to his own children, not to secure success but for a more altruistic reason.

“You do it because it is the right thing to do and because other people deserve it.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

One year ago, we told you the story of a baby boy who was stealing the hearts of everyone he met at Riley Hospital for Children.

Born with multiple birth defects, including a heart condition and a severe case of scoliosis, he and his parents, Dylan and Michelle Murphy, were in for a rough road.

Today, that little boy is 16 months old with a heart that is as good as new, thanks to his cardiology team at Riley, including Dr. Mark Turrentine and Dr. Michael Johansen.

As we kick off Congenital Heart Defect Awareness Week, we decided to check in on little Bryce Murphy, now that Dr. Turrentine has completed the full repair on his heart, which failed to form correctly in the womb, leading to a condition called tetralogy of Fallot.

ToF, which is estimated to occur in one of every 3,000 live births, actually includes four defects: a narrowing of the pulmonary valve, a hole between the bottom heart chambers, a shifting of the body’s main artery (aorta), and a thickening of the right lower heart chamber.

Michelle Murphy recalls the moment Dr. Turrentine came out into the surgical waiting room at Riley after completing Bryce’s repair.

“He said it couldn’t have gone any better, and I just fell to the floor and cried. That was all I needed to hear – this chapter is over. His heart is better.”

Unfortunately, two days post-surgery while still hospitalized, Bryce’s oxygen levels were dropping and he tested positive for the RSV virus.

“Poor kid coughed and coughed,” his mom said, adding that she and her husband refer to these setbacks as Murphy’s Law in the Murphy family.

Now recovered, Michelle said, “Bryce is like a new kid since his heart surgery. He’s always playing with his toys, always on the move, always smiling, never a fussy baby.”

Whenever they see Dr. Turrentine around the hospital, he always recognizes them and stops to chat, a small thing that means the world to them.

“He’s just so sweet to his families. He really is a wonderful man.”

Bryce is developmentally behind, partly due to his spinal condition (Riley neurosurgeon Dr. Laurie Ackerman called it the worst she’s ever seen), and he just recently learned to sit up. But he continues to work with physical and occupational therapy to move toward milestones.

He sees neurology for hypoxic-ischaemic encephalopathy (caused by a loss of blood and oxygen flow to the brain) and craniosynostosis, a birth defect in which the bones in a baby’s skull join too early. Dr. Ackerman and the neurosurgery team completed a repair for the latter condition in October.

Despite it all, Bryce is thriving, his parents say.

“He’s just always so happy.”

That bright personality helps get them through the tough times.

“We’ve been open with Bryce’s story and our emotions and everything we go through,” Michelle said. “We have dark days.”

When people ask how they cope, she is honest, grateful for the support of a therapist through Riley who works with families of medically complicated children.

“She’s great at keeping us strong. We love Bryce and we just do it.”

And the family has a large group of supporters who lift them up and rally around Bryce. Even some of the nurses from the Heart Center at Riley still come down to see him when he is in for other procedures.

They’ve also made great friends with other parents in the Heart Center, creating another family of sorts.

Dylan’s company hosted a fundraising golf tournament last summer, raising $35,000 to support the establishment of a rehab center on the heart unit.

“That heart center just means so much to us, and we want to do anything we can for them.”

Riley Children's Health's pediatric cardiology and heart surgery program is ranked sixth in the nation by U.S. News & World Report and is the best in the Midwest for children's heart care.

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Baby Bryce stole their hearts from Day 1 - This little guy has multiple birth defects, including a serious heart condition, but he also has a big fan club at Riley.

Three-year-old Bryson Crenshaw looks through a camera at a photographer’s picture of a tiny baby and asks a simple question:

“Does he have a lost leg like me?”

It’s enough to stop you in your tracks. The baby is not missing a leg, but Bryson is trying to make sense of his own situation.

The Lafayette boy is recovering at Riley Hospital for Children after nearly losing his life to a deadly infection that strikes without warning.

Necrotizing fasciitis, better known as flesh-eating disease, is a bacterial infection that results in the death of parts of the body's soft tissue.

Symptoms include fever, fatigue, swelling, blisters and pain. Treatment involves immediate delivery of IV antibiotics. Surgical removal of dead or infected tissue from the wound is often required.

“It came out of nowhere,” said his mom, Megan Crenshaw. “I thought he had the flu.”

STRAIGHT TO THE ER

They’d been resting that day after other family members had come down with the flu, but when her husband, Ben, got home from work Jan. 5, she checked their son’s temperature again, and it was 104.5. They took him straight to IU Health Arnett Hospital in Lafayette, where Megan works.

“When we got there, he was complaining about his leg hurting, and he was limping. I thought he had a muscle ache, but the doctor saw a little swelling in his knee and ran a scan.”

When ER doctors in Lafayette began to suspect necrotizing fasciitis, they asked if Bryson had suffered any cuts, scrapes or burns. Maybe his pet Yorkie, Ace, had nipped at him.

Nothing. There were no obvious wounds or scratches for bacteria to enter.

In a matter of hours, Bryson’s leg went from normal to swollen to red and beginning to turn purple in the ER, his mom said.

Lafayette doctors knew he needed to be transferred to Riley. He arrived at about 2 in the morning on Jan. 6. By that time, blisters had started to form on his leg.

LIFE-SAVING TREATMENT

Megan and Ben Crenshaw have a hard time coming to grips with this new reality – that their little wild child who adores actor Jamie Foxx (Mr. Foxx, are you listening?) and nerf gun fights with his brother is lying in a hospital bed. Alive but forever changed.

“It was so dire,” Megan said as she watched her child flex his muscles for an audience of nurses and therapists.

“He’s a little much today,” she smiled, “but it’s good to see him like this. He’s feisty.”

He was on a ventilator for several days – she couldn’t wait to see that removed.

“I just wanted to see my baby’s face, hear his voice, know that he’s still there. It looked like we were going to lose our kid, and we couldn’t even comprehend what was going on.”

Today, though, Bryson has come through the worst of the illness, tolerating multiple surgical procedures, including regular debridements – the removal of dead, damaged or infected tissue to improve the healing process.

Dr. Christine Caltoum, division chief of pediatric orthopedic surgery for Riley Children’s Health, said Bryson had a rapidly progressing case of necrotizing fasciitis, leaving him with a lot of dead tissue and muscle and requiring immediate, specialized care. How it happened, she can’t be sure. Sometimes these cases can be caused by trauma, but often there is no explanation.

LIFE OVER LIMB

On Jan. 18, after exploring all available options, his right leg was amputated above the knee.

“At the end of the day, it was life over limb,” his mom said.

Pediatric intensive care physician Dr. Riad Lutfi saw Bryson not long before the decision was made to amputate.

“He went back and forth to have more of the area cleaned, but I believe that there was just not enough healthy tissue to hold his leg together, and that’s unfortunate,” Dr. Lutfi said.

“You run the risk that the infection will spread and risk his life. He needed a fair chance to see what we could save, but at some point it needed to happen.”

Fortunately, he added, the disease is rare. Fewer than 20,000 cases are seen in the U.S. each year.

Riley sees about one case per year.

“It is such a scary thing,” he said, reflecting back to a previous patient who suffered a critical case of NF a few years ago and also had one leg amputated. That child is thriving today, adapting well to a prosthetic limb and staying active in wheelchair basketball.

“These kids are previously healthy and end up losing part of their body,” Dr. Lutfi said, “due to severe rapidly spreading infection.”

“But both of them are resilient and strong and have great family support and a bright future.”

SHARING THEIR STORY

Megan has been journaling about the family’s experience on Facebook, and an army of supporters, including church members and friends, are in their corner.

On this day, Bryson is keeping one eye on his mom and one eye on the photographer in the room. Asked if had any stuffed animal friends he wanted in the pictures, he shook his head and said, “I only have nurse friends.”

Naturally, he has his favorites. Among them are Milly Jennings on the burn unit, where he has spent the past week or so, and Jason Burnham on the PICU.

But his mom is his constant. He wants her to toss and kick the ball and build Mr. Potato Head during physical therapy while he stands on his one good leg with support from therapists, and he wants her to help put him back in bed after therapy.

“I’m glad to see him making progress,” Megan said, as Bryson begged for his nerf gun so he could battle his visitors. “We’re aiming to get him into inpatient rehab. His momentum is full force right now, and I’m worried if we go home, he’s going to lose that.”

And just like that, pediatric rehabilitation specialist Dr. Francisco Angulo Parker stops by Bryson’s room to evaluate him for transfer to rehab.

“We need to make sure he’s in a good place medically, so we’ll talk to his primary team and plastic surgery to make sure we’re moving in the right direction,” Dr. Parker said on Tuesday.

He looked good to go last week, but a complication has the move on hold for now, Megan said Friday.

“This has been such an emotional time for our entire family.”

But Bryson, who turns 4 next week, is the one keeping them going, she said.

“He’s like, ‘Mom, Dad, I’m good. I’m OK.’”

She recalls how she and her husband sat down to talk with their son the day before the amputation was scheduled.

“We tried to explain to him, the doctors are going to take your leg off and this is why,” Megan said. “And he’s like, ‘OK, who’s the doctor?’ Now, he can explain, ‘I had an infection in my leg and it was making me sick, so they had to take it off.’”

SOURCE OF INFECTION UNKNOWN

Doctors still don’t know where the infection started in Bryson, whether it came from bacteria in the intestines that got into the bloodstream and traveled to the leg, or vice versa.

“When they were doing the first debridement on his leg, they did a scan and found he had some necrotic tissue in his intestines,” Megan said. “Luckily, they were able to stop that.”

While it’s impossible to predict when or how the disease might strike, seeking immediate care is the single most important thing a parent can do, Dr. Lutfi said.

“Parents should seek help when a child has symptoms of infection or sepsis, including fever, not acting right, not making urine. Pay attention if you find an area of pain or swelling. Luckily, his lungs, heart, kidneys and liver remained pretty good through this process. He’s alive; a lot of adults would not survive this.”

Still, the critical care physician said, “we have a lot of work to do to learn more about necrotizing fasciitis and earlier detection.”

Spreading awareness of the disease is the family’s mission now, which is why they agreed to do this story.

“PAY ATTENTION TO YOUR KID”

“I don’t think we really understood what was going on until he had his amputation,” Megan said. “That was the moment when we began to process. What is this disease? Where did it come from? Do people know about it? We didn’t know about it; this is a whole new world.”

Her message to people is: “Pay attention to your kid. This disease can take over your entire body in a matter of hours,” she said.

“If they get a cut, maybe you think it’s not a big deal. But clean it, pay attention. Listen to your kids. He was saying his leg hurt, and I didn’t see anything. Go with your instinct, go with your gut. If I had not taken him to the ER, if I had just given him Tylenol, he might not have woken up in the morning,” she said.

“That was the scariest thing.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

One year ago, Julia Holman and Caleb Medrano were grieving the loss of their unborn child due to an ectopic pregnancy.

Three-hundred and sixty-seven days later, on Jan. 30, 2023, they welcomed 8-pound, 11-ounce Leo Noe Medrano into the world at Riley Hospital for Children.

A joyful day to be sure, but the weeks leading up to Leo’s birth were not easy for the couple. Holman was suffering from a high-risk complication called placental abruption, meaning her placenta had partially detached from the uterus.

The condition could deprive the baby of oxygen and nutrients, so Holman and baby required continuous monitoring in the Riley Maternity Tower to ensure that Leo was not in distress. That’s where Holman lived for several weeks before Leo’s birth, in case an emergency delivery was required.

A native of Fishers, Holman has worked as a travel nurse for the past couple of years, most recently at IU Health West Hospital. Previously, she worked in Oregon and New Mexico, which is where she suffered her pregnancy loss last year. The couple moved back to the Indianapolis area last fall.

She admits to going a little stir-crazy during her time at Riley, anxious about the impending birth of little Leo, but fate intervened to calm her nerves and give her a unique purpose.

Holman spent her days creating heartfelt mementos for other grieving moms who had recently lost babies.

She worked with Rebekah Delaney, program manager for Pathways to Hope bereavement program at Riley, to handwrite notes and poems for bereaved parents.

“Because of her ectopic pregnancy, she was really compassionate toward our bereaved population,” Delaney said. “I brought in my paper cutter and some scrapbook paper, and she went to town. It’s a really meaningful thing she did for our patient population … from a mom who knows the pain and sorrow of loss.”

According to Delaney, one in four pregnancies ends in miscarriage, and one in 60 pregnancies ends in stillbirth. Perinatal and infant loss increase a mother’s risk of depression, anxiety, post-traumatic stress disorder and suicidal thoughts.

Holman recalls medical personnel in New Mexico treating her pregnancy loss as simply a medical emergency, rather than the loss of a child.

“I struggled really hard,” she said. “I understood as a nurse, but the emotion wasn’t there.”

Luckily, her relationship with Medrano allowed them both to process the loss on a deeper level together. They created their own memory box as a way to grieve their child.

That’s why she was so invested in helping other moms during the many weeks she spent at Riley.

“It’s so easy to get wrapped up in what’s going wrong in this pregnancy, but helping these moms has made me realize how blessed I am,” she said, just days before giving birth.

“Leo is our relentless little rainbow baby. I know I’m in the right place here. We are safe.”

Delaney said Holman’s compassion in action has been moving to see.

“It’s been really special over these past few weeks to see how a hand-written note, a poem from another bereaved mom has impacted those who have suffered loss,” she said.

“It was really beautiful for Julia to be in her own grief and in an uncomfortable environment, yet she was willing to take on this task, and it impacted so many other grieving moms.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

The most coveted nursing award at Riley is named for Margaret Martin Roth, who passed away Jan. 22 at the age of 102.

“She was a wonderful leader,” retired nurse Kathryn McGregor recalled. “I was so fortunate to have her as a mentor.”

In her obituary published last week in The Indianapolis Star, Martin Roth was described as “a courageous, compassionate, dedicated and innovative nursing leader.”

Born in Franklin, Indiana, she graduated from the Methodist Hospital School of Nursing in 1942 and worked in family practice for the next 10 years, taking time off in 1945 to serve in the U.S. Army Nurse Corps during World War II.

She earned advanced degrees in pediatric nursing and spent several years teaching at the university level before joining Riley in 1965, under the leadership of Dr. Morris Green.

There she made an indelible mark on children, parents and colleagues.

“A great woman, nurse, teacher, mentor and innovator,” said Susan Gunn, longtime neonatal nurse and researcher at Riley. “I always looked up to her and learned from her. I learned how to do your research and fight for what you think was right even if it was new and everybody said you were crazy.”

Deb Hutchison, another longtime NICU nurse, remembers being in awe of Martin Roth.

“She had an aura about her. I remember seeing her as a person on a mission. I was shaking in my own shoes … but she evoked confidence in where Riley was headed.”

Always motivated to improve the physical and psychological health of young patients and families, Martin Roth worked with Dr. Green and nurse Karen Radar to establish the first Parent Care Unit in the country in 1971. Rooms accommodated both patients and parents, ideal for children going home with special needs. Many newborn ICU grads came to Parent Care to gain weight, or for parents to learn tracheostomy care or other skills before being on their own at home.

“I always thought how difficult it must be to have a child in the hospital and not be able to stay with them,” Martin Roth said during an interview later in life.

In 1974, she was promoted to director of nursing services for Riley, where she would have an even greater impact on Riley’s philosophy of care and compassion, listening to those closest to the bedside and inspiring a collaborative environment.

McGregor remembers being a young nurse, fresh out of school, when Martin Roth hired her and soon promoted her to head nurse because at the time she was one of only two nurses on the burn unit who had a bachelor’s degree, rather than a two-year degree.

“She mentored us. She was wonderful about making sure we got to conferences, anything to help us grow as leaders,” said McGregor, who retired in 2019 as clinical manager after 44 years on the burn unit.

Her boss’ open-door policy was refreshing, she said, recalling how she and others could go to Martin Roth and tell them about something that had gone wrong that day.

“She was not punitive,” McGregor said. “She would simply tell us how we could do things differently the next day. She was a very strong nursing leader, a wonderful teacher, mentor and friend to a lot of people.”

While Martin Roth didn’t marry until she was in her 70s and never had her own kids, McGregor was impressed with how much she understood children.

“She was so invested in and passionate about how we took care of children and how we protected them.”

But she also enjoyed going out with some of the nursing team after work.

“She was so much fun. She always wanted to know the latest trends and what people were doing,” McGregor said. “She came to my baby shower for my son 37 years ago. We celebrated birthdays, weddings, everything.”

When Martin Roth retired from Riley in 1985, McGregor and others planned a grand party out in the courtyard and had her driven home in a Bentley.

“It was fitting for her. She was a dignified and classy lady.”

An annual Margaret Martin Roth Nursing Scholarship Award was established to honor nursing staff who skillfully demonstrate patient/family-centered care.

For her 99^th birthday, McGregor and friends surprised Martin Roth with a card shower, overwhelming her with cards from Riley team members and patients alike.

McGregor and Radar last saw their friend and mentor during a visit last fall to Marquette Manor, where Martin Roth lived for several years.

No memorial service is planned, but a small gathering of friends will celebrate her life in the spring. Memorial contributions may be made to Riley Children’s Foundation.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

They might have been friends, these two boys.

Sure, a few years separated them, but Hunter Tuzinski and Beckett Culp shared a love of Hot Wheels, basketball and making people happy.

Hunter was just 7 when he died in a tragic accident at his home in northwest Indiana last June.

Beckett was just 3 when he received a lifesaving liver transplant at Riley Hospital for Children last June.

The two boys never got to meet, but their families came together Friday in a special way to honor Hunter and his gift of life.

It was Hunter’s liver that IU Health surgeon Dr. Richard Mangus transplanted into Beckett, giving the spirited little boy who radiates joy his best chance at a full life.

What better way to celebrate Hunter’s life (and what would have been his 8^th birthday Thursday) than to collect Hot Wheels and donate them by the truckload to Riley.

That’s what Beckett’s parents, Klark and Lauren Culp, and Hunter’s mom, Nakita Tuzinski, did, amassing more than 2,500 Hot Wheels toys that will be divided between Riley and a Chicago children’s hospital where Hunter received care.

Mattel, the maker of Hot Wheels, got wind of the donation and pledged to contribute to the cause as well.

Hunter’s mom and Beckett’s mom first connected online at Thanksgiving, but both families, including grandparents and siblings, met for the first time over dinner privately Thursday night.

On Friday, they came to Riley to deliver the vast collection of toys to Riley Cheer Guild Director Ann Hannan and her team.

Beckett and his siblings, along with Hunter’s brother and sister, pitched in to unload some of the toys from the truck into bins for eventual sorting in the Riley toy room.

The scene would have made Hunter happy, his mom said.

“He loved to make other kids happy, to make them laugh.”

That includes his baby sister, Lecie, who was just 1 when Hunter died.

“They were inseparable,” Tuzinski said. “He always wanted to hold her.”

It didn’t take much to make her son happy, Tuzinski said. One day it might be chicken nuggets from McDonald’s, and the next day a cardboard box might do the trick because the first-grader could create something out of it.

“He was very smart. We always said he was going to be an engineer because his mind was always working,” she said.

And like his late father, “he was obsessed with cars.”

Count Beckett among the car-obsessed too. He has his own collection of Hot Wheels at home, but his parents have taught him the value of giving back.

This wasn’t the first time he and his family made a sizeable toy donation to Riley. Last fall, they brought Hot Wheels, baby dolls, LEGOs and infant toys to Riley kids to celebrate Beckett’s fourth birthday.

Like other patients, Beckett received many toys during his lengthy stays at Riley before and after his liver transplant. He thought it only fitting to help replenish the hospital’s supply for other kids.

But this day wasn’t about her son, Lauren Culp said, even as the preschooler worked the lobby of Simon Family Tower at Riley like a pro, visiting with Dr. Mangus, hepatologist Dr. Jean Molleston and other team members involved in his care.

“I want all the attention to be on Hunter and the amazing things he has done and how he is changing so many lives,” Culp said. “How can you thank someone for such an amazing gift?”

For Dr. Mangus, the answer is simple.

“What I tell my patients is the best way to say thank you is to live a healthy life.”

Through the gift of organ donation, Hunter saved four lives, his mom said, something that would make her son proud.

“Our family suffered a great loss, but to see that he helped so many people, it’s amazing,” Tuzinski said. “I’m super thankful. Hunter loved making kids smile, so that’s the best thing we can do.”

As Beckett gave out hugs and smiles freely during the toy drop-off, one of those hugs was saved for Tuzinski, a moment that the grieving mother will treasure.

“I feel Hunter would want me to know this family,” she said. “He’s done so much good.”

She keeps her son close in many ways. A tattoo of his heartbeat adorns her forearm, and a gold necklace featuring his image hangs close to her heart.

But tucked inside that heart is the love she will feel for her little boy forever.

“I’m honored to be his mom.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

Four-year-old transplant patient “gives the best hugs” - Beckett Culp received a donor liver in June. Today, he is giving back the best way he knows how – with toys for other kids at Riley.

“Everybody needs an Ann in their life,” says Sara Bushong. “She’s my person.”

That sums up the bond between Riley Children’s Health audiologist Ann Kalberer and Bushong, a longtime patient and now nursing student.

The two have known one another for nearly half of Bushong’s life, ever since she transitioned as a teenage patient from Riley’s hearing-aid team to the cochlear implant team.

“It’s so weird to hear you say you’re in your 30s now,” Kalberer told Bushong as they met in the basement audiology clinic at Riley last week. “You were still wearing hearing aids in both ears in 2008.”

Although Kalberer has been seeing Bushong ever since the younger woman was first evaluated and subsequently fitted with cochlear implants to overcome the profound hearing loss that she was born with, this was not a regular appointment.

Bushong wanted to say a special thank-you to the woman who has been her cheerleader, coach and friend, especially now that she is enrolled in the Indiana University School of Nursing at IUPUI.

“I have been seeing Ann for a long time, and she always goes above and beyond, not just for me but for her other patients as well,” Bushong wrote in an email. “I always leave feeling extra grateful for what I can do because of the encouragement, care and love she gives each time.”

Earlier this month, Kalberer managed to fit Bushong in for a last-minute appointment at the end of the day to switch out some equipment and talk about a special stethoscope she would need for nursing school due to her hearing loss.

“When accepted to the School of Nursing, you need a bunch of equipment, including a stethoscope, blood pressure cuff … things you need to pass your skills test,” Bushong said. “For people like me with hearing loss, a stethoscope can be a challenge. Not a lot of them are hearing loss-friendly.”

While there have been amplified stethoscopes for years, Kalberer said, “when you have an implant you tend to lose all of the natural residual hearing that you have, so just amplifying sound is not helpful.”

A stethoscope the size of a coin that connects to Bluetooth and works with cochlear implants, however, was just what she needed. And it turned out that Kalberer knew of one that had been donated by a previous patient. She left the office and returned minutes later with the device.

“It was amazing how quickly it all fell into place,” Bushong said. “I went to school and had to do a skills check-off, and I didn’t have a single problem. All because Ann was generous not only to fit me in at the end of a busy day but to let me have this device.”

When Kalberer downplayed her contribution, her patient politely interrupted, reminding her that she always offers encouragement and positivity, including when Bushong considered whether she should apply to nursing school.

“Aww shucks,” Kalberer said with a smile.

But seriously, the longtime audiologist added, “I wanted her to know that her hearing loss shouldn’t hold her back. She does so well with her devices. There is a wide range of performance outcomes for patients, and she does beautifully. I just wanted her to know that was something she was capable of. I’m pretty darn proud of her. It’s like she’s my own young ‘un.”

Bushong, who grew up on the southside of Indianapolis with a love of horses, has a degree in equine science from Murray State University, but nursing was calling to her.

“I think just being with Ann and always coming to Riley being around kids and seeing what nurses can do for them lit a fire in me.”

Bushong received her first cochlear implant in her left ear in 2010, and two years later, insurance approved the implant for her right ear. The results were off the chart.

People had warned her that things might sound garbled, but her experience was clear as a bell, she recalled.

“The day I got my implant activated, I was in my car and decided to put my audio cable in because I wanted to see how different it was. I was listening to Ozzy Osbourne’s ‘Crazy Train,’ and I heard it perfectly. It was overwhelming.”

What she describes about the sound that first day is “off-the-rails exceptional,” Kalberer said.

“That is not a typical experience. It takes time for the brain to learn the new code, but she’s young, and she had a lot of hearing that she used up until the time she was implanted. Change one of those things and it’s a lot harder.”

With implants, Bushong said, even the most mundane sounds are thrilling.

“You forget how things sound – like the toilet flushing or my mom wearing flip-flops – little things you don’t think about as a person with normal hearing. But when you hear it again, it’s goosebumps.”

As she moves forward in her life and career, Bushong said it’s reassuring to have Kalberer in her corner.

“I can continue in my nursing career knowing that because of her, I can do this. I can do great things.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Nearly 33 years after his death, Ryan White continues to remind those who knew him how to live – with dignity, compassion and grace.

That includes the team at Riley Children’s Health, in whom Ryan and his family entrusted his care after he was diagnosed with HIV/AIDS when he was just 13.

“I will only go to Riley,” the teen told his mom as he fought the disease that weakened his immune system. “Take me to Riley.”

On Tuesday, a sculpture of the smiling young man created by artist Bill Mack was reinstalled near the original entrance to Riley. It had been in storage while the hospital space was redesigned to accommodate Riley’s new Maternity Tower.

On hand for the rededication were several members of the Ryan White Center for Pediatric Infectious Disease and Global Health at Riley Children’s Health, as well as Riley President Gil Peri and Dr. Elaine Cox, Riley’s chief physician executive and former longtime director of the Ryan White Center.

“Ryan White humanized HIV and AIDS … at a time when those with the disease were shunned by many who didn’t know enough about (it),” Peri told the assembled group before the sculpture was unveiled. “He’s been a beacon of hope for our community and throughout the world.”

It was Dr. Martin Kleiman, then a world-renowned pediatric infectious disease specialist at Riley, who told Ryan he had the disease in 1984. Little was known about AIDS then except that it was most certainly a death sentence.

The Riley physician told the Indiana boy he likely had six months to live. But Ryan would go on to live five more years, and in that time, he changed the face of a disease that had been racing across the world.

At the time, AIDS was poorly understood by the public, despite assurances that it was not an airborne disease but spread solely through body fluids.

While it struck members of the gay community the hardest, it could also be acquired through blood transfusions and intravenous drug use. Ryan contracted the disease through a blood transfusion.

The teen became one of the most well-known faces of AIDS after his Indiana school refused to re-admit him once he was diagnosed, fearing the disease would put other students and staff at risk.

A lengthy legal battle put Ryan and his mother, Jeanne White-Ginder, in the spotlight, and celebrities including Elton John, Elizabeth Taylor and Michael Jackson took up his cause. All of it combined to put Riley on the map. And it defined a career of advocating for children – both for Dr. Kleiman and Dr. Cox.

In a matter of years, HIV-AIDS went from a terminal diagnosis to a chronic disease. A remarkable achievement, but a trajectory Dr. Cox believes might not have happened without the brilliance and advocacy of Dr. Kleiman and the voice of a teenage boy who just wanted to go to school.

“I don’t know that a young boy from Kokomo woke up one day and said I’m going to be an advocate for HIV awareness,” she said in an earlier interview. “He wanted to go to school, and he had a family that wanted him to be happy and accepted. His became a voice larger than anyone could have imagined. That voice helped move the needle so much faster because you couldn’t look at him and not somehow relate to him as a kid.”

As a young resident doing a rotation on the infectious disease unit back in 1990, Dr. Cox cared for Ryan before he died April 8 of that year. She recalled not only being impressed by her young patient but also by Dr. Kleiman’s compassionate approach to care and his staunch advocacy for his patients.

“I think sometimes when you’re young you don’t understand how those moments will change you,” she said. “It changed me. It changed Riley.”

It pushed Riley onto the front pages of newspapers throughout the country, as media descended on the hospital.

With support from the Indiana Department of Health, the Damien Center and other partners, along with fundraising through the Indiana University Dance Marathon, Riley built up a strong and respected infectious disease team that Ryan’s family agreed to lend its name to after his death at the age of 18.

Today, Dr. Chandy John leads that team and credits Ryan for his extraordinary wisdom and grace during a time of unrelenting attacks on the gay community and on Ryan and his family.

“He was so wise and ahead of the curve in a time when there was a great deal of phobia,” Dr. John said. “One of the greatest honors of my life is directing this center.”

Ryan White is part of Riley Hospital’s legacy, Dr. Cox said. Not just because of the attention he brought to the hospital and its infectious disease team, but because his case demonstrated how Riley is focused on improving the health of children throughout Indiana.

“In addition, it’s important to know that people like Dr. Kleiman stood up for the rights of people who were suffering,” she said. “It is an important part of our history, and this statue reminds us that’s who we are and this is what we do.”

Dr. Kleiman, now retired and in poor health, was unable to attend Tuesday’s statue rededication, but his wife, Maria, said “he would be so happy to see this back up.”

While her husband was in the media spotlight daily during Ryan’s final days at Riley, he never lost sight of his purpose, and that was caring for all of his patients and their families, Maria Kleiman said.

Their three young children apparently were watching. All three are pediatric physicians today.

“He was so passionate, not only about Ryan but all of his patients,” she said.

Now that the face of Ryan White has returned to the halls of Riley, it is fitting to remember that the young boy who inspired hope and compassion during a time of fear and misinformation continues to show the way forward.

“He is part of Riley Children’s, and this statue is a way to memorialize his spirit,” Peri said. “Many people around the world consider Ryan White a hero, and we at Riley Children’s do as well.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories

Thirty years ago today, Ryan White died at Riley - The fear that surrounded HIV/AIDS three decades ago is not unlike the fear many feel amid the current coronavirus pandemic. But Dr. Elaine Cox says there are lessons learned then that guide her today.

Sawyer Draper is a feisty, funny 7-year-old who has been dealt a rough hand in life.

The first-grader has been in a fight against cancer since he was just a toddler, so living with the disease is nothing new to him.

But that doesn’t make it any easier for his parents, Brian and Alicia, big brother Nolan, or for Sawyer himself.

The Wabash family has been making the two-hour journey from their home to Riley Hospital for Children off and on for five years, ever since Sawyer was diagnosed with acute lymphoblastic leukemia at the age of 2½.

Last week, they were back on the stem cell unit at Riley for Sawyer’s second stem cell transplant. His first transplant was in 2020, and for two years, he did well, but the appearance of large, purplish bruises on his legs triggered concern for Alicia Draper.

“He’s a boy, so he has tons of bruises, but these were different,” she said while taking a break Tuesday in a family lounge at Riley. “I knew something wasn’t right. He wasn’t sleeping well and was crying in pain, but he didn’t have a fever.”

Tests revealed the blood cancer was back.

Sawyer’s cousin Remy, a closer bone marrow match than anyone else in the family, saved his life two years ago. The 13-year-old is doing it again, donating his own stem cells for the little boy, who calls his older cousin “his bestie.”

“There were no matches in the donor registry for Sawyer, and his brother didn’t match at all,” Alicia said. “His dad and I are half matches, but we’re older.”

Extending the testing to first cousins helped identify Sawyer’s donor as the best match of all, which Alicia said is a miracle.

In preparation for the stem cell transplant Friday, Sawyer received twice-daily radiation treatments for four days last week at IU Health University Hospital.

That’s where he was headed Tuesday afternoon – his second trip of the day – when he climbed atop the gurney, briefly pulled down his mask and stuck out his tongue at one of his favorite nurses.

“He's feeling good now,” his mom said with a laugh. “He’s pestering and pranking the nurses.”

Sawyer, who is under the care of oncologist Dr. Terry Vik and stem cell physician Dr. April Rahrig, will be hospitalized at Riley for six to eight weeks post-transplant.

The family’s faith has been their biggest source of strength during this five-year journey, Alicia said.

“I’m a teacher, and I have a support system within my school, and we have lots of friends and family all over the United States who want to help,” she said. “But our faith in God is really the biggest thing. Not that I don’t get down or have lots of anxiety, but you have to keep going.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Not many people can understand the world of heart transplant.

Imagine being a young adult heart transplant recipient learning to navigate that world as you also pursue goals like a college education, marriage and a career.

Each month, several young people – Riley Children’s Health patients – get together virtually in what’s billed as a support group, but also serves as a social group.

There, they share experiences and challenges – whether it be with insurance, a scary medical situation or transitioning to adult care.

They know that no one can relate quite like another heart transplant recipient.

“I like the community it brings,” said 22-year-old Leighton Akins, who has been transplanted twice at Riley, most recently in 2021. “I like how we just talk about similar issues we all face.”

Kobe Brannan, another two-time heart transplant patient, echoed that sentiment.

“It’s nice to talk to people who get what I feel,” the 24-year-old newlywed said. “They understand the trials of being a heart transplant patient.”

“You get a lot of understanding here that you don’t get everywhere else,” agreed Lexi Fuchs, 19, a sophomore at Indiana State University who received her new heart at age 11.

“It’s good to know you’re not the only one having a struggle,” Emily Hume added, whether it’s about getting IVs placed or managing multiple medications. The 21-year-old senior at Indiana University was just 12 when she required a heart transplant.

Leighton has graduated from college and works in corporate compliance. He has a pup named Sadie, who made a guest appearance at last Sunday’s support group meeting, which is facilitated by IU Health social worker Leah Crane and transplant coordinator Debbie Murphy.

Lexi shared a harrowing tale of becoming extremely ill while at school last week, which prompted a trip to the campus health clinic, followed by hours in the emergency department of a Terre Haute hospital. Eventually, she was transferred by ambulance to Riley.

It was her first visit to a hospital outside of Riley, and the first time she didn’t have her mom by her side immediately. She was aware enough to share her transplant history with the outside medical team, along with her medication list, and put them in contact with Murphy, who helped her navigate a stressful situation.

Murphy encouraged the young people to be prepared for a scenario such as this and to take on that advocacy role for themselves. For many, it might be the first time they’ve had to navigate a medical emergency without their parents beside them.

“It’s really important to know your symptoms, when they started, have they gotten worse, your temperature and your medications,” she said.

In Lexi’s case, the care she received before she arrived with her mom at Riley was appropriate, but her Riley team advocated for her transfer to Indianapolis so they could oversee her treatment.

Riley cardiologists Dr. Robert Darragh and Dr. John Parent manage the care for most of these transplant patients.

Murphy, who has known most of the group participants and their parents for up to two decades, said giving the young adults a space in which to share stories and learn from guest speakers, is key to their continued success as they move toward independence.

“First of all, it has given them a social network,” she said, adding that they can learn from others in the group how to deal with certain challenges.

“They are a remarkable group,” Murphy said. “It’s been a privilege to watch them grow.”

The group came together in person last spring at a restaurant, but Crane hopes to secure tickets to a Pacers or Colts game this year, so they can enjoy a fun outing.

For details on the group, email lcrane1@iuhealth.org.

As the shot rolled around the rim before dropping in, Randy and Jane Beachy cheered for their teenage son like any supportive parents would.

Around them, the gym erupted with cheers and applause. Even the referees and the opposing team clapped, as Nathan Beachy ran to celebrate with his teammates.

But for 16-year-old Nathan, it was just the latest in a series of goals he’s been accomplishing since he was a baby.

Never mind the diagnosis of Down syndrome or the open-heart surgery at just 3 months old. He is living his best life.

“He’s come a long way,” said Jane Beachy, from the family’s northern Indiana home, where her son plays on the MCAC (Mishawaka Christian Athletic Club) Wildcats.

In the background, Nathan can be heard shouting, “Go Wildcats!”

Born in South Bend, he was diagnosed with two holes in his heart that would require surgery to close. His cardiologist had hoped the boy could wait until closer to his first birthday to have the operation, but “he just did not grow,” his mom said.

“His heart and lungs were working so hard. Eventually, he began to deteriorate, and we had to get him in for surgery.”

Nathan was transferred to Riley Hospital for Children in Indianapolis, where Dr. Mark Rodefeld operated on the 11-week-old to repair two septal defects.

The boy’s parents were told to expect to be at Riley for 10 to 14 days while Nathan recovered, but they were discharged after only four days.

“His recovery was amazing,” Jane Beachy said. “We had all kinds of people praying for us.”

The family, which includes two older daughters, wanted to share Nathan’s progress with Dr. Rodefeld, grateful for his role in saving the boy’s life.

“We thought he might enjoy seeing one of his patients experiencing joy and living life to its fullest,” Randy Beachy said, referring to a video that captures Nathan on the basketball court.

“We’d like to say to Dr. Rodefeld, ‘Here is one of your success stories. He’s come a long way,’ ” Jane Beachy said.

It’s the kind of feedback that Dr. Rodefeld welcomes, calling it a privilege to take care of children and see them flourish years later.

“It really is gratifying,” the surgeon said. “I am constantly reminded that many of my patients are going to outlive me, and I often share that with parents. Most are concerned about what their child’s life will be like and whether they’ll have restrictions.”

Other than being asked to avoid aggressive contact sports like football, most don’t have restrictions, Dr. Rodefeld said.

When told that Nathan loves roller coasters, he laughed and said, “I’m glad he enjoys that, and I’m sure his heart is just fine.”

A heart surgeon at Riley for about 20 years, Dr. Rodefeld said he prefers to send patients and parents home with a dose of encouragement rather than a list of restrictions.

“For me, the message is, you can’t really restrict a child very easily, nor should you,” he said. “They should grow up believing there’s nothing they can’t do. I strongly believe in that.”

Nathan seems to have gotten the message.

When he’s not playing basketball or going to theme parks, the teen has plenty of interests to keep him busy.

He’s a greeter at his church, where people look forward to his bright smile, his warm hugs and enthusiastic handshakes, his parents said.

He loves riding his bike, swimming, boating and kayaking. He has an ear for music and loves playing the drums. He also likes to draw, make lists and organize things – his closet, drawers, videos and toys.

Hearing stories like this from former patients makes Dr. Rodefeld’s day.

“I get Christmas cards, birthday updates and thank-you notes. It’s extremely gratifying and helps to balance out some of the more challenging times.”

Crystal Miller didn’t get her New Year’s Day baby, but she did deliver a beautiful baby boy in the pre-dawn hours of Jan. 2 in the Maternity Tower at Riley Children’s Health.

And for that she is extraordinarily grateful, especially considering her baby, Beau Ryan, required three blood transfusions while still in the womb.

The concept of doing surgical procedures on an unborn baby is hard to get your mind around. It was definitely a challenge for Miller and her partner, Kraig Bontrager.

“Going into this pregnancy, we didn’t expect this,” said Miller, who also has a 5-year-old daughter with Bontrager. “Getting the news from my OB that there was an issue and being referred to a specialist is very scary. Then to hear that they’re going to refer you to an even more high-risk specialist – it was kind of gut-wrenching.”

But the maternal fetal medicine team at Riley put the couple’s minds at ease as best they could.

FETAL INTERVENTION

Riley fetal interventionalist Dr. Hiba Mustafa, a fetal medicine subspecialist who focuses on diagnosis, intervention and surgery in the womb, first met Miller, whom she describes as “super sweet,” in October when Miller’s specialist in South Bend, Dr. Lori Day, referred her to Riley for more specialized care.

Miller, who lives in northern Indiana, was suffering from a condition called maternal RH isoimmunization. Basically, her body was producing antibodies that were interfering with the baby’s blood cell production.

Specialized ultrasound technology that measures the blood velocity in an unborn baby’s brain is used to diagnose anemia.

“The fetus protects the brain first, so when the fetus gets anemic, it shifts blood from its body and sends it to the brain,” Dr. Mustafa said. “That’s why when baby is anemic, the velocity in that vessel in the brain becomes really high.”

Left untreated, the condition can be fatal to the baby. Before the technology and the teams were both in place to do these procedures, surgeons often had to deliver babies early to prevent further harm to the fetus.

“Some of these antibodies can pass through the placenta to the baby and it breaks down baby’s blood cells and makes baby anemic,” Dr. Mustafa said. “The baby can go into heart failure and die if they don’t get a transfusion. So, we transfuse blood while baby is inside the uterus.”

As expected, it’s a very delicate procedure, the surgeon said, made even more difficult by the fact that Miller’s placenta was below the baby, rather than on top.

“If it’s on top, it’s more accessible. Her baby’s butt was always in the way,” Dr. Mustafa laughed. “You have to manipulate the baby to find your spot.”

Inserting the needle through the mother’s stomach into a vein in the baby’s umbilical cord is the first trick. Then doctors take a percutaneous umbilical blood sample to see how anemic baby is and calculate how much blood to transfuse.

“AMAZING AND INCREDIBLE”

The entire procedure takes about two hours, with Miller numb from the chest down.

“I can’t see what they’re doing, but I’m listening to three doctors working on me and the baby and they have a very small spot to work with,” Miller said. “How amazing and incredible is it that we have the technology and ability to do that to save babies.”

Miller’s baby required three intra-uterine transfusions, the first on Nov. 9 at about 27 weeks’ gestation. Others followed on Nov. 23 and Dec. 14.

It was a stressful time, Miller acknowledged, worrying about whether she would need the intervention and praying that everything would be OK.

“I will say I’m typically a very positive person, happy-go-lucky,” she said, but the worry was getting to her, aggravating her pre-existing hypertension, which doctors were closely watching.

“Kraig has been the one who’s been helping me stay positive, telling me it’s all going to work out. Having that and our amazing family checking in, praying for us, has been phenomenal. I feel extremely blessed to have the doctors that we do, the family that we do and that my body has been cooperating,” she said.

“We couldn’t have asked for better doctors than Dr. Day and Dr. Mustafa. We knew we were in great hands. The entire team at Riley has been extremely helpful, caring and just amazing.”

BEAU MAKES HIS DEBUT

On Sunday, Jan. 1, Miller was induced at Riley and delivered 6-pound, 14-ounce baby Beau about 16 hours later. She got to hold him for a few minutes before he was whisked away to the NICU in the maternity tower, where he remained 24 hours later getting a little help with his breathing and nutrition through a tube.

But shortly after noon on Tuesday, when mom and dad took the elevator down to the third-floor NICU for the second time that day, they found their little guy off the CPAP (continuous positive airway pressure) machine and the feeding tube, revealing his perfect little face.

Miller teared up immediately as she looked at her baby, stroking his cheek and memorizing the details of his face and his tiny fingers.

“This makes me so happy,” she whispered as he lay sleeping. “Hi baby boy.”

Later in the day, Miller and Bontrager were thrilled when they were told that Beau was being discharged from the NICU to stay with them in their room at Riley before going home.

“I could not be more pleased with Riley Hospital and just everybody here,” the new mom said.

FETAL SURGERY PROGRAM

Dr. Mustafa, who earned her medical degree from the University of Baghdad (Iraq) College of Medicine and completed multiple residencies and fellowships, most recently at the University of Maryland, joined the Fetal Center at Riley Children’s Health in July, subspecializing in fetal diagnosis, intervention and surgery.

She is one of two fetal surgeons (Dr. David Streitman is the other) on the fetal intervention team, the only program like it in the state.

“Not just any children’s hospital can have this specialized program,” she said. “If they don’t have a pediatric surgeon who can pitch in, if they don’t have a neurosurgeon, if they don’t have a neonatologist experienced with these babies, it can never happen.”

Riley’s program is supported by multiple specialties, as well as skilled nurses, pharmacists, support teams and systematic planning, Dr. Mustafa added.

“You cannot have such a program with just maternal fetal medicine specialists. So many pieces have to come together. It’s way more than the surgeon,” she said.

“Because you have all these amazing and skilled people, it’s possible to have such a program.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

They are the heart of 3 West.

They are the parents and caregivers of kids who spend weeks and months in the hospital, waiting for the most precious gift – a new heart.

For all those on that journey now, many more have gone before them. Together, they lift each other up, offering advice, friendship and understanding.

Since the pandemic began nearly three years ago, isolation was a way to help keep people safe. But it also left people feeling adrift and alone.

Last year, Riley Hospital for Children social worker Leah Crane saw an opportunity to bring people together, if only virtually.

On the second Wednesday of the month, she hosts an online support group for the parents/caregivers of Riley heart transplant patients. Not just those who are waiting for a transplant, but those who have already received the gift of organ donation.

It’s been comforting and educational, for the parents and for Crane.

“They have been such a great support to each other,” she said. “I always leave feeling inspired.”

IN THE TRENCHES

LaShalle Broadnax’ daughter, Jaelyn Kinchelow, had her first open-heart surgery in 2012 at the age of 14. Now 24, she received a heart transplant at Riley last March.

“Jaelyn is still in her early stage of transplant, and we’re still going through the trenches,” Broadnax told the group. “She was in her last year of nursing school when we found out she had to be transplanted, so for her, it was a very sad time.”

Having other parents to talk to has helped ease her burden, Broadnax said.

“It’s a connection – actually knowing other people who are going through this. It’s not like we’re done now and there’s nothing else to deal with. It’s a fight we continue today.”

Mallory Aylor knows that better than most. Her son, Junior, was transplanted last year, just before his first birthday. He went home healthy and happy, and the family cherished a year of life outside the hospital.

In May of 2022, however, the toddler’s donor heart began showing signs of rejection, and he returned to Riley. Doctors listed him for transplant again in July. So, he spends his days and nights at Riley with his mom or dad by his side.

CONNECTING WITH PARENTS

Crane is grateful for the continued presence of Aylor, Broadnax and others in the meetings, as well as their efforts to connect with other parents/caregivers outside the group setting.

“Some people don’t want to come to the group, but they do want to talk to somebody who’s been through it,” Crane said. “It’s a unique thing to have a heart transplant, and not many people can understand what that’s like.”

It's not just the frightening diagnosis, but the medications, the hospitalizations, the immunosuppression and the waiting, she said.

“Parents want to meet other parents. It’s an easy way to get questions answered and feel less alone. These are some of our rock star parents. They are amazing.”

Melissa Cobb’s son, Cayce, was transplanted last April. Now 16, he is back in school and doing his best to return to some kind of normal teenage life.

Having people she could talk to who understand that transition and all the feelings that come with it has helped her feel less alone, Cobb said.

Others represented at the meeting included the mother of a young man who received a heart transplant 13 years ago, another whose granddaughter received a new heart four years ago when she was 2 years old, and a mom whose daughter has been at Riley for several months while she waits for a hero heart.

WAITING FOR THE LIGHT

“This time of year is the hardest,” said Aylor, who also has a 4-year-old daughter at home.

Not just because of the holidays, but because of the coldness and darkness of winter. It takes a physical and emotional toll.

“You know you’re not alone, but it helps to see other people who’ve gone through it, to know they’re on the other side,” she said. “There is a light at the end of the tunnel.”

Broadnax, who has been attending the meetings since early on, echoes those statements.

“This can be a lonely process to go through. You don’t hear a lot of people who are transplant recipients,” she said.

She finds herself in the middle – listening to those who have traveled this road long before her, while doing her best to offer hope to others who are just beginning their journey.

“I can look up to the ones who are getting through, and I can be inspiring to the ones coming in,” she said. “You can do this.”

Talk about inspiration. Broadnax said her daughter inspires her to live her best life, no matter the situation.

“No is not in her vocabulary,” Broadnax said of Jaelyn. “We’ve had several setbacks, and she is navigating through it all.”

Jaelyn was set to graduate from nursing school last May but ended up in the hospital in January before her transplant in March. As soon as her doctors cleared her to return to school, she was back at it, finishing her last semester this month, even shadowing a Riley Heart Center nurse.

Her hope is to one day work at Riley with the same nurses who cared for her. And while the ups and downs before and after transplant have been hard on this mama’s heart, Broadnax gains strength from her daughter’s resolve.

“There is no stopping her.”

COTA OFFERS INFO

During the December meeting, representatives from COTA (Children’s Organ Transplant Association) spoke with the group about fundraising support they offer to families on the transplant journey.

“Our sole mission is to help you raise funds for your transplant-related expenses,” explained Lauren Scott, marketing manager.

That can include money for travel expenses before, during and after transplant, as well as temporary housing, insurance deductibles, food and household expenses. Funds raised are available for as long as the patient or family needs them, even into adulthood.

COTA, which has been assisting families for more than 30 years, charges no fee for its services.

The fundraising support provided by COTA has been a big help to Aylor’s family, she said.

“We didn’t anticipate having to be transplanted again here in a year, so it has helped more than I could ever imagine. It takes the burden off your shoulders so you can focus on your child and not have to worry about how you’re going to pay those expenses.”

To find out more about the parent/caregiver heart transplant support group or a young adult heart transplant patient support group that also meets monthly, email lcrane1@iuhealth.org.

Riley Children’s Health pediatrician Dr. Shannon Dillon is used to seeing sick kids, but this fall and winter have been busier than ever, with respiratory viruses, including influenza, RSV and COVID, circulating like wildfire.

“There has been a pronounced increase in respiratory illness compared to the last two winters,” she said. “Because so many more kids were either doing school from home or wearing masks, we saw a real drop in every other illness that we usually see. There was almost no influenza the last two winters in the country, which was fantastic while it lasted, but now it’s back.”

The physician and mother of two said the surge in RSV (respiratory syncytial virus) began earlier than ever this year, slamming hospitals, doctors’ offices and urgent care centers.

While RSV has begun to slow, the numbers for influenza and COVID are quickly climbing in Indiana and across the country, causing an increased demand for medications to control symptoms.

And while it might be tougher to find antibiotics and other medications for kids, it’s not due to a manufacturing shortage like what happened with baby formula over the summer.

“There is medication, and so far, we’ve been able to find alternatives for everybody,” the physician said.

If you have struggled to find fever-reducing medications or antibiotics for your child, Dr. Dillon feels your pain but offers advice for how best to navigate this winter of discontent.

Why is it so hard to find cold/flu/pain medications or antibiotics like amoxicillin for children lately?

It’s not that there’s a supply chain issue creating a bottleneck, she said. “It’s partly due to the fact that we are seeing more sick kids for longer this fall than we usually would have at this time,” so people may be going through medications more frequently. And much like the toilet paper shortage at the beginning of the pandemic, she said, “when your kid gets sick again and again and again, you’re more likely to stock up the next time you go to the store. Then there’s not anything there for the next people who go.”

According to the Food and Drug Administration, a national shortage of different medications, including amoxicillin, is expected to last for the next few months due to increased demand.

What should I do if I can’t find the medication my child needs?

The first step, if it’s not at your usual store, look somewhere else, Dr. Dillon advises. “It’s not like we’re seeing that medications are not anywhere right now. If you typically get brand-name Motrin, be OK with looking for generic ibuprofen instead.” Or consider a different formulation. “If you usually get liquid medication, maybe your kids are old enough to do the melt-aways that go on the tongue. A lot of school-age kids are big enough to try tablets. Pretty much any kid who’s at least 50 pounds is big enough to do a Tylenol or an ibuprofen,” she said. And though not all of them will be able to swallow a tablet, you can crush it up and mix it in something like applesauce or Hershey’s syrup. The latter actually masks the taste of medications pretty well, Dr. Dillon said.

How do I know if my child really needs to take something for a cold or fever?

“Parents really don’t like seeing their kids have fevers, but we remind them that it is actually your body’s way of fighting off an infection,” she said. “So, if your kid looks good and is still playful and happy, one of the best ways to not need so much medication is to not give it around the clock just because the thermometer says their temperature isn’t 98.6.” Dr. Dillon said data show that people who take anti-fever medications on a regular basis can have viral symptoms for longer periods of time. “We’re seeing enough kids with influenza having symptoms for long enough right now, we don’t really want to do anything to prolong that,” she said. Obviously, however, if your child has a fever of 103 or 104 and they look uncomfortable or they’re having ear pain, you want to treat them so they’re not in pain, she added.

What about antibiotics?

While an urgent care center might be more likely to prescribe an antibiotic, it’s best to reach out to your child’s regular doctor with concerns when possible. He or she has an established relationship with your family and will be able to follow up more easily, Dr. Dillon said. Taking a less aggressive approach to treatment can be a good thing in some cases.

“Bacteria are smart. They are really great at finding ways to replicate and get around antibiotics, so the more you get exposed to them, the more we see resistant bacteria developing. We try to be better antibiotic stewards today than we were 30 years ago. If your child’s ear maybe looks a little red, but they’re still playful and don’t have a high fever, maybe we watch it for a day or two to see if they even need an antibiotic,” she said. “Sometimes you have no choice if a child is in pain. Nobody likes looking at their kid and feeling like they’re uncomfortable, and certainly no one likes being up with them all night either, so I understand that as a mom.”

When should I call the doctor if I can’t find a medication?

“It never hurts to reach out to your child’s pediatrician if you’re having trouble finding the usual medications, because they can always guide you to what is OK to give and what isn’t,” Dr. Dillon said. “Sometimes people can find only cough and cold medications that are for older children, and we wouldn’t want them to give it to babies. One of the things we often get asked is whether expired medications are OK to give, which is a good thing to touch base on. If it’s only recently expired, that may be OK, but depending on the medication, some can actually get stronger if they sit around for longer, so it can be too big of a dose,” she cautioned. Her office doesn’t often get samples of medications that they can distribute in a pinch, she said, “but we can certainly help guide people to what other options there might be.”

Is it too late to get my child vaccinated for flu or COVID?

The vaccine is the best way to protect for flu and COVID, cases of which are being seen in increasing numbers in Indiana, she said. “We recommend the flu shot, and we definitely recommend the bivalent COVID booster for anybody 5 and older.” The bivalent booster has actually been approved for younger kids, but it hasn’t been rolled out to as many clinic sites for kids to get yet, she said. While you still might get the flu or COVID after being vaccinated, you and your child are much less likely to get seriously ill or get a secondary infection like pneumonia that would require a trip to the doctor, or worse, a trip to the emergency department.

“We also ask parents to be patient with those of us who take care of kids because we’ve all been working a lot harder than usual,” Dr. Dillon said, adding, “If you had told any of us in December of 2019 that this all would be happening, I don’t think we could have made this up.”

And it’s not over yet.

“With all the travel and gatherings over the holidays, I’m pretty sure it’s only going to get worse before it gets better.”

Just remember to take common-sense precautions: Keep your children away from people who are sick, make sure they wash their hands frequently, and consider a return to wearing masks, particularly in crowded situations.

Omarr Gadling was watching the clock before he walked out of Riley Hospital for Children on Monday.

At precisely 12:40 p.m. Dec. 19, he marked 400 days inpatient at Riley, first waiting for, then recovering from, a heart transplant.

He was itching to leave for sure. Never mind the crowd of nurses, doctors, therapists, fellow patients and parents who lined the hallway to wish him well – 400 days was long enough.

“I’m feeling great, ready to go,” he said.

Gadling, 47, is older and taller than your average Riley patient, but his weak heart landed him in the children’s hospital, which has an experienced team of specialists who follow patients with congenital heart defects from infancy well into adulthood.

Patience, prayer and poetry have gotten him through the long days and nights in the hospital.

Riley heart center nurse Julia Doyle Burgess showed the backpack jammed with Gadling’s notebooks of poetry, all of it scrawled in longhand since he was first admitted back in November 2021.

Forty pounds of poetry, Burgess estimated, as she pulled it and Gadling’s other possessions in a red wagon through the crowd of well-wishers on 3W.

“Thanks for letting me take care of you, Omarr,” she said. “You’ve always been such a blessing to care for.”

Gadling’s passion for poetry earned him the 2022 National Spoken Word Award for Overcomer of the Year, presented to him last month during a surprise visit to Riley by members of P.O.E.T. (People of Extraordinary Talent).

Known as “Brother O” to his poetry friends and fans, he co-hosts a radio show, “Voices Behind the Pens,” and looks forward to returning to his home in East Chicago.

“Right now, the goal is healing up, getting stronger, going home, working on poetry and someday being on my own.”

On Monday, wearing a Purdue Boilermakers sweatshirt and a shy smile, Gadling couldn’t wait to start the next chapter in his life post-transplant as he made a beeline for the elevator.

Behind Gadling was his mom, Carlean, who will stay with him in Indianapolis for the next several weeks while he completes rehab at COLTT (Center of Life for Thoracic Transplant) at IU Health Methodist Hospital.

“This is the season of miracles,” she said, as she watched her son head out the door of his hospital room.

Among those waiting were Gadling’s cardiologist, Dr. Robert Darragh, and transplant coordinator, Debbie Murphy, who have guided Gadling through the ups and downs of the past 400 days.

“It’s a team effort,” Dr. Darragh said, but he couldn’t have been more pleased to see Gadling take his turn as the celebrity discharge of the day. “He’s seen a lot of these over the last year.”

While many of those patients and parents cheering Gadling on likely were wondering when their day would come, the sight of someone going home always brings hope.

The keys are patience and prayer, Carlean Gadling said.

“I believe there’s always a rainbow at the end of a storm. If you have strong faith, it’s coming.”

But she reminded her son, “For you to get a heart, somebody had to lose their son. Never forget that. And take good care of the heart that you’ve been given.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

A surprise visit to “Brother O” comes straight from the heart - A Riley adult heart transplant patient gets a boost from members of his Chicago poetry family, who traveled to Indianapolis to present him with a special award.

Maverick is just 7 months old, but he already celebrated his first graduation a few days ago.

The little guy rolled out of the NICU at Riley Hospital for Children to the strains of “Pomp and Circumstance” playing in the background. It was his first-ever trip outside the hospital.

And he was headed for home.

Sporting a tiny T-shirt that read, “Peace out, Riley. I’m moving in with my parents,” Maverick marveled at all the attention he received from staff as he made his grand exit with his mom and dad, Brianna and Sean Presnell.

Brianna had planned to deliver their son in Terre Haute, closer to their Brazil home, but a 20-week ultrasound revealed that Maverick had a congenital diaphragmatic hernia, a hole in the diaphragm (the large muscle that separates the chest from the abdomen).

Organs in the abdomen (such as intestines, stomach and liver) can move through the hole in the diaphragm and upward into a baby's chest, compromising the lungs.

The serious birth defect meant that Maverick would be born in Riley’s Maternity Tower just after Mother’s Day. He underwent surgery to repair the hernia at 9 days old and did well, but tests revealed that he also had a heart defect that affected the way blood flowed through his lungs.

Surgeons in Riley’s heart cath lab were able to close the PDA, and Maverick began to heal, but setbacks with his underdeveloped lungs meant he was never able to successfully come off the ventilator for very long.

His parents opted to have their son receive a tracheotomy to manage his airway, and after much training on their part, he was discharged with a ventilator, oxygen and a feeding pump.

Still, that feeling of going home? Well, it was “amazing,” Brianna said, after seven long months away. And it was always on Maverick’s time. Earlier hopes for discharge kept getting pushed back.

The family celebrated 100 days in the NICU back in August with balloons, cupcakes and a “Top Gun”-themed drawing from one of his nurses.

But on Dec. 13, it was go time, and the Presnells were packing up.

“I can’t even describe the feeling at this point. I think we’re still in shock,” she said after her first night at home with her baby boy and the rest of her family.

“I was so excited to go home, but at the same time I was so scared. Riley has been our home; the nurses have been our family. I don’t know what we’re going to do without them.”

Just in the short time he’s been home, Maverick already seems happier and more active, his mom said.

“He is trying to roll over, and he’s growling and talking to us. That’s his favorite thing to do.”

Maverick, who has been in the care of Riley pulmonologists Dr. A.I. Cristea and Dr. Sarah Bauer, will continue to be followed by Riley, specifically its chronic vent and palliative care teams.

“We lean on the palliative care team quite a bit,” Brianna said, including nurse practitioner Kortni Haupt. “They’ve been with us since the beginning and have assured us that they will follow us through until we are ready to cut ties.”

To receive palliative care, a patient must be suffering a serious illness, not necessarily a terminal illness. Supportive care can be offered alongside potentially curative treatments.

“They walked into our room one of the first nights we were there,” Brianna recalled. “It was nice to have somebody you could cry to and vent to, someone to answer questions, and there was no judgment.”

Doctors have said Maverick might need to stay on the trach and vent for a couple more years to allow his lungs to get stronger, but his parents are just happy to have him home.

“It’s crazy to see how different he is already compared to being in the hospital,” Brianna said, adding, “We are so thankful for Riley, honestly. We wouldn’t be here today if it weren’t for the nursing staff and all the respiratory therapists. We can’t say enough good things about them.”

Turning 13 is a big deal. But how do you celebrate when you’re in the middle of treatment for a brain tumor?

Allison Baker didn’t let it stop her from making a splash with her sister, Ava, and parents last month at Great Wolf Lodge near Cincinnati.

She went down as many water slides as she could, pushing through her fatigue to enjoy it all, her mom said.

Allison, diagnosed with CNS (central nervous system) germinoma earlier this year, has counted on her family since she received the frightening news after experiencing an unusual increase in thirst and urination, beginning last fall.

She had just started the cross-country season at Brownsburg West Middle School at the time, so her parents, Chris and Amy, thought maybe she was just extra thirsty.

During a visit to her pediatrician the following February, however, unexplained weight loss led the physician to suspect something was wrong, and Allison was referred to Riley Children’s Health.

Tests found that her pituitary stalk, the connection between the pituitary gland and the brain, was inflamed, measuring much larger than it should, Amy Baker said.

Doctors treated her for diabetes insipidus, which occurs when the body can’t regulate how it handles fluids. The condition is caused by a hormonal abnormality and isn’t related to diabetes. In Allison’s case, a brain tumor had affected the function of the pituitary gland.

A follow-up MRI showed the growth had doubled, and another growth was found on the pineal gland, a tiny gland in the brain that is part of the endocrine system.

Germinomas are usually malignant but tend to grow and spread slowly and can usually be cured. They occur most often in teenagers and young adults. CNS germinoma accounts for about 3% of all brain tumor diagnoses.

While the condition is treatable, it requires chemotherapy, radiation and multiple MRI scans over several months. Allison is under the care of Riley oncologist Dr. Daniel Runco and endocrinologist Dr. Juan Sanchez.

“We were told it’s treatable, so we didn’t feel too doomsday about it,” Allison’s mom said. “It was hard to take in, but this kid is the strongest person I know, and we just pushed through.”

Allison went through four rounds of chemo at Riley, then received daily doses of proton therapy – a type of radiation – for several weeks in Cincinnati, finishing just after Thanksgiving.

Scans have shown no evidence of disease, but Allison will have one last MRI next month to ensure that she is clear.

Asked how she stayed strong, the seventh-grader credits the circle of people around her.

“I had a lot of support from teachers and my friends and family. It helps to know that people care, and I learned to smile more,” she said.

Some of those lessons she learned from a stranger – another young girl in Florida who received the same diagnosis. The family met her through Facebook.

“They have helped us through this,” Amy Baker said. “We understand what it brings to you when you are able to connect with somebody else. We want to pay it forward.”

Beth Armstrong, pediatric neuro oncology coordinator and nurse at Riley, said Allison is wise beyond her years.

“She was really scared when she started her treatment, but she handled it so well. She said to me one day that if she can tell her story, and hearing it helps anyone that also feels scared, then she wants to do that,” Armstrong said.

“She has worked so hard through treatment to continue in school and get back to running, and she did it with a smile every day. I have been really lucky to be a small part of Allison’s story.”

Running is Allison’s passion. She wasn’t able to compete in cross-country this season but hopes to be ready for next year, she said.

“Cross-country is my thing. It took me awhile to discover that,” she said. “I wish I was allowed to be running miles right now, but as soon as I build up the endurance to run even half a mile, I’m going for it. I want to be ready for next year.”

Over the past several months, Allison’s cross-country team hasn’t forgotten her, making her an honorary team member all season, presenting her with a jersey signed by the team, even running by the family’s Brownsburg home and dropping off inspirational messages in the yard.

“It’s been a beautiful thing,” Baker said, grateful for the outpouring of love from their community. “It’s been a roller coaster, but we are extremely grateful that we’re having to endure only seven months of treatment. And the people at Riley – we love the nurses. There are so many special people there that we’ve bonded with.”

Among those people are nurse Sarah Timberlake and neuro nurse practitioner Kelsey Knight, both of whom have been a godsend for Allison, her mom said.

It is people like that and others in the community who have inspired Allison to want to do her part to help someone else.

“I feel like if I can put my story out there, it might comfort someone else,” she said. “This has shown me so much about myself and about people around me that I wouldn’t have known if I hadn’t had to fight. I’ve learned not to take things for granted.”

As she settles in for a quiet holiday season at home with her cats, Yoshi and Reese, and dogs, Brooklyn and Charlie, Allison is also looking ahead – first to January, when she will get her final end-of-treatment scan.

And after that – hopefully, smooth sailing. The family will celebrate with a cruise in February.

Justine Atkinson has lost count of the number of hands that worked in unison to save her child.

Nurses, doctors, therapists, technicians – all using their skills to make sure that little Mathew “Mattie” Atkinson would be home to celebrate Christmas.

It all started with a peanut.

It was about 6:30 on a Friday night, Nov. 4, when 16-month-old Mattie got hold of one of his brother’s snacks and inhaled a peanut. He launched into an on-and-off coughing fit that lasted about a half hour, his mom said, but seemed OK afterward.

Still, she called the pediatrician after hours, worried about putting her son to bed, and left a message. By the time the physician called back, Mattie had fallen asleep, and the doctor told her not to worry.

By the next day, the toddler was wheezing, and his mom was worrying. The following Monday, she took her son to the pediatrician, who diagnosed Mattie with RSV – a respiratory virus – and a double ear infection. At home his parents gave him antibiotics and breathing treatments.

But by Friday, he still wasn’t getting better. He wasn’t interested in eating or drinking.

“SOMETHING WASN’T RIGHT”

“Everything spiraled,” Atkinson said. “My husband (Brad) and I just knew something wasn’t right.”

It was clear the next day that something was definitely wrong when Mattie began coughing again in the family’s living room and turned blue.

They rushed him to a hospital near their Greenwood home, where he was stabilized before being transferred to Riley Hospital for Children’s pediatric intensive care unit. There, he was sedated and put on a ventilator to help him breathe.

That was the beginning of a two-week stay filled with ups and downs as doctors treated Mattie for multiple viruses. But it was more than that.

It was that pesky peanut.

CODE BLUE

The worst moment for Mattie’s parents came when a code blue rang out in their son’s room as his vital signs dropped just days after he arrived. Both were in the room when it happened. Also there was Kelsi Croy, PICU nurse and Mattie’s aunt.

She was Mattie’s “guardian angel,” Justine Atkinson said about her sister-in-law, who stepped away from her job for several days so she could help support the family.

Atkinson will never forget that code blue.

“It happened so quick,” she said. “His stats started to drop, and Rachel (Dr. Rachel Gahagen) pulled the code blue. To see all the people who came in and how they each had a job … if it wasn’t for them and all of their knowledge and skill, who knows if he would have survived.”

As Atkinson had feared, that peanut her son had choked on a week earlier hadn’t gone away. Turns out it was lodged in his left bronchus, which conducts air into the lungs. And it explains why his left lung kept collapsing.

DIGGING DEEPER

Dr. Alvaro Tori, a critical care physician and associate professor of clinical pediatrics with the IU School of Medicine, said Mattie’s case was unusual because he presented as a patient with bronchiolitis and tested positive for two viruses, so that’s where the care team initially focused its efforts.

But a chest X-ray looked “unusual,” Dr. Tori said, even though the peanut wasn’t visible. He called for a pediatric pulmonologist to do a bronchoscopy, a procedure in which a thin tube is passed through the nose or mouth, down the throat and into the lungs to get a better look.

The peanut was in the left bronchus and needed to be removed. But it would move on its own before they could get him into the operating room.

Within hours, pediatric surgeon Dr. Brian Gray was called in to place Mattie on a lung bypass support system emergently to give his lungs a rest when the peanut became dislodged from the bronchus and floated up into his trachea (windpipe), an even more critical problem.

“Normally in a situation where we have a foreign body in the airway, we can go to the operating room and do this or we can even do a bronchoscopy in the ICU to remove the foreign body,” Dr. Gray said. “Unfortunately, this was stuck in the worst possible place, so really almost no air could move at that point.”

FOUR DAYS ON ECMO

After Dr. Gray, surgical director of ECMO (extracorporeal membrane oxygenation) and technicians placed Mattie on the lung bypass support, the surgeon inserted a bronchoscope with a tiny camera and a grasper tool on the end to remove the peanut, which came out in two pieces.

The peanut was stuck in the boy’s bronchus for long enough that a large amount of mucus had built up in his lung behind the obstruction, Dr. Gray explained. Once they were able to get the peanut out, it took a while for the team to safely reinflate his lungs and to allow them to heal enough to bring him off ECMO four days later.

All of it, he said, was a major team effort across multiple specialties at Riley. But it started with parents who listened to their own intuition.

“I was quite impressed at the family’s persistence in making sure he received appropriate care because they knew something wasn’t right,” Dr. Gray said. “If this peanut had become dislodged and gone into his main trachea while at home, it could have been a much worse scenario.”

RELIEF AND GRATITUDE

Over the past few weeks, Mattie has continued to heal and return to his playful self, his mom said. He is home now, walking again thanks to physical therapy to strengthen his legs. He’s even trying to play basketball inside the house with his older brothers.

It’s a remarkable turnaround and one that his parents credit to Riley.

“The care we received and the compassion were amazing,” Atkinson said. “I don’t know how I can ever thank all those doctors and nurses who had a hand in his care.”

She’s trying though. She dropped off cookies in the PICU after her son was discharged and sought out Dr. Tori to get a photo with him before they left the hospital. Now at home, she is writing thank-you notes to everyone she can remember on her son’s care team.

For his part, Dr. Tori said Mattie’s case represents Riley at its best. He wants to recognize the surgeons, pulmonologists, respiratory therapists, ECMO technicians, pharmacists and social workers who were part of Mattie’s team.

“THIS IS WHO WE ARE”

“It was such a great collaboration. This is what the multidisciplinary approach looks like,” he said. “This is when different specialties, different disciplines come together to take care of patients. And this is what Riley represents. This is who we are.”

It’s not just about the medical care though, he added.

“We can know about medicine, we can know how to treat a disease, but we can never forget that there’s a human being in that bed,” Dr. Tori said. “That is someone’s child, someone’s loved one in that bed. And there are family members who are struggling through this journey. We need to think of them as well, with empathy, with compassion.”

That compassion was on display, according to Mattie’s mom, who said Dr. Tori, Dr. Gahagen and others took the time to sit with the family and talk about the treatment plan beyond normal rounding. And the nurses, well, don’t get her started.

“I always knew nurses were amazing, but seeing it firsthand, they truly are amazing people.”

She gives a special shoutout to Abby Tarbutton, who was Mattie’s night nurse and listened to her concerns about the peanut, suggesting the toddler get a bronchoscopy. And, of course, her sister-in-law, Kelsi Croy, whom colleagues call “the heart of the PICU.”

PICU nurse Kristen Freeman said to see Croy on the other side of such a scary situation was gut-wrenching.

“However, she has been superwoman, just like we knew she would be. She advocated for him from a medical perspective and from a family perspective, while also maintaining professional boundaries,” Freeman said.

They are all heroes to Justine and Brad Atkinson.

“Everyone was incredible, and I’m just so thankful,” Justine Atkinson said. “I feel like I’m leaving part of my heart here. The way they loved us and loved him, I couldn’t imagine being anywhere else.”

CHOKING PREVENTION TIPS

Drs. Tori and Gray want to remind parents and caregivers to be vigilant with babies and young toddlers when they are eating. The holidays present a challenging time, as food may be easily accessible during parties and family gatherings.

Both fathers themselves, the physicians know how quickly a child can get into something they shouldn’t. And while food accounts for half of all choking episodes – think hot dogs, grapes, candy, carrots, peanuts, etc. – be aware of other hazards, Dr. Tori said.

“Choking can happen with coins, buttons, small batteries, magnets, toys. It’s important that we always check our home, under tables and furniture, between cushions and on the floor for small items that can cause choking,” he said.

And supervise small kids at all times when they are eating.

“Make sure they never run, play or lie down with food in their mouths.”

For more tips on keeping kids safe, check out healthychildren.org, powered by the American Academy of Pediatrics.

Family photo by Macey Chase Design, all other photos submitted

McKenzie Leichtnam was known as the life of the party. The organizer. The jokester.

“An all-around cool kid.”

These memories and more floated around the first-floor boardroom at Riley Hospital for Children on Wednesday, as the young man’s family reunited with hospital team members who played a big part in McKenzie’s life.

The Carmel native who received a heart transplant at just 13 days old passed away in his sleep at the age of 20, leaving an unbearable hole in the lives of those who loved him.

But he also left so much joy. So much love.

It was written on the faces of those who gathered to honor McKenzie for his final gift.

PAYING IT FORWARD

In death, the young man who benefited from an organ donation two decades earlier paid it forward – donating tissue that would help others heal.

That’s what drew representatives from Indiana Donor Network to join McKenzie’s parents, Paul and Collette, and his sister, Kelsey, at Riley last week.

There, they shared hugs, handshakes and memories with Riley heart surgeons Dr. John Brown and Dr. Mark Turrentine, who performed McKenzie’s transplant in 1990 when the pediatric transplant program at Riley was young.

Also there were transplant coordinators Debbie Murphy and Regina Rossetter, Echo technician Jennifer Johnson, longtime ICU nurse Debbie Kilpatrick, EKG technician Susan Gude and others.

Cardiologists Dr. Robert Darragh and Dr. Randy Caldwell (retired) weren’t able to attend the event, but they deserve much of the credit for McKenzie’s two decades of good health, according to Dr. Brown.

Surgeons are there for the intense part of care, but cardiologists see the patients regularly throughout the year, closely monitoring their heart function, Dr. Brown said.

TOURNAMENT OF ROSES PARADE

Indiana Donor Network requested the reunion last week as a way to honor McKenzie in advance of the Tournament of Roses Parade in Pasadena, California, next month.

The 2023 Donate Life Rose Parade float will feature 44 memorial floragraphs honoring donor heroes (including McKenzie) from across the nation who have given the gift of life.

A floragraph is a portrait of a deceased donor created with organic materials such as spices, seeds and flowers.

McKenzie’s floragraph was on display at Wednesday’s gathering, with only the eyebrows to finish. His family will have that honor, according to Lindsey Johnson, community outreach coordinator for Indiana Donor Network.

The organization is hosting the Leichtnam family in Pasadena for the parade Jan. 2.

“We are very excited to have the Leichtnams attend to be a part of honoring McKenzie, help decorate the float and to meet other beautiful donor families,” Johnson said, adding that people who will be riding on the float are organ recipients and those walking alongside it are living donors – those who have given a kidney or part of a liver.

“The purpose is to inspire people to say yes to organ donation.”

HER LIFE’S WORK

Kelsey Leichtnam believes in the cause so much she went to work for Indiana Donor Network after her brother passed away in 2011.

It’s her way of honoring his memory and paying it forward.

She said it is not lost on her family that so many of McKenzie’s care team either still work at Riley or returned to the hospital for the reunion.

“We feel really honored to have had your continued support throughout this whole journey,” she told the assembled group. “I hope that your work is a little inspired by McKenzie, given that he was one of your first pediatric transplants. The fact that you’ve never forgotten him really means a lot.”

Kelsey was just 20 months old when her brother received his hero heart as a newborn at Riley, so she has no memories of that time. But she does recall riding through the halls in a red wagon and getting stickers during his follow-up visits.

“Riley to me is a safe place,” she said. “It’s been a big source of comfort – all the good stuff happened here.”

She has great affection for the Riley team who cared for her brother, including Dr. Darragh, who attended her wedding just two weeks ago. And she makes sure to reach out when her job as a hospital liaison for IDN brings her to Riley.

“A SWEET SOUL”

Debbie Murphy, who became very close to the family as transplant coordinator, has a soft spot in her heart for McKenzie and all the young patients she has helped over decades in her role.

“He was just a delightful little boy and young man,” she said. “Just a sweet soul.”

Paul Leichtnam said his son led an extremely good life. He was a huge sports nut, playing everything but tackle football, and excelling at golf. He got to attend a World Series game featuring his beloved Boston Red Sox and a Super Bowl with the Green Bay Packers.

When he passed away, he had just completed a campus visit to Indiana University, where he planned to transfer after two years at Vincennes University.

“He was very excited,” his dad recalled.

That night, he went to sleep and never woke up, leaving his family devastated, but also determined to keep his memory alive.

“He is part of all our gatherings,” Leichtnam said. “We talk about him all the time. And we try to pay it forward.”

In addition to raising money for Make-A-Wish Foundation and the Riley Children’s Foundation (by sponsoring two Riley red wagons), they advocate for organ donation.

They will never forget that another family decades ago made the decision to donate their child’s organs so that McKenzie could live.

And while they would have wished for more time, they are forever grateful for the 20 years they had together as a family.

McKenzie’s life was filled with an abundance of love, his sister said.

“His laugh was infectious. His jokes were hilarious. His love was once in a lifetime.”

Learn more about organ donation here.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Jessica Bona was in shock when her then-17-month-old son was diagnosed with type 1 diabetes.

Zayden Thomas, her busy, active toddler who had taken his first steps months earlier, became lethargic to the point where he couldn’t walk. He lost weight, despite chugging milk, and his cheeks were flushed.

Doctors in Lafayette, Indiana, near where Bona and her family lived at the time, were alarmed when his blood sugar spiked over 800, and he developed diabetic ketoacidosis, a serious complication that requires emergency intervention with insulin and intravenous fluids.

He was LifeLined to Riley Hospital for Children, where his care team worked to manage his condition.

It was a lot for a young mom to process.

That was a decade ago, and Zayden is now a 12-year-old straight-A student in seventh grade. He loves reading and writing books, playing video games and hanging out with family and friends.

But he and his entire family must still work to control his diabetes, for which there is no cure.

November is Diabetes Awareness Month, and Zayden’s mom wants to lend her voice to those who are advocating for more research and better treatments.

Especially now that her 3-year-old daughter, Mackenzie, is also displaying symptoms of the disease.

Type 1 diabetes, once known as juvenile diabetes, is a chronic condition in which the pancreas makes little to no insulin. The body uses insulin to allow sugar (glucose) to enter cells to produce energy. Without it, a person may suffer life-threatening ketoacidosis, like Zayden did.

Symptoms of type 1 include increased thirst, frequent urination, hunger, fatigue and blurred vision. It is different from type 2 diabetes, which is mostly lifestyle-related and develops over time in adults.

Different factors, such as genetics, environment and some viruses, may cause type 1 diabetes, which usually appears during childhood or adolescence. Because there is no cure, treatment is directed at managing the amount of sugar in the blood, using insulin, diet and exercise to prevent complications.

For Bona, Zayden’s diagnosis was the start of a new world of doctor appointments, finger pricks, sleepless nights, carb counting and insulin pumps.

“I knew what diabetes was, but I never thought it would happen to my kid, and I didn’t really know what it meant,” the Anderson mom said. “I had no clue.”

Difficult doesn’t begin to describe those first few months, which turned into years, she said.

“I would get up three or four times a night to check his sugar,” which meant pricking his finger, she said. Sometimes he woke up, sometimes he didn’t.

Bananas, fruit snacks and maple syrup were go-to snacks to help boost Zayden’s blood sugar level when it dropped, she said.

Now he has an insulin pump, which has been life-changing, Bona said, and a continuous glucose monitoring system, so he and his parents can see his sugar levels at all times.

Zayden sees Dr. Juan Sanchez, pediatric endocrinologist at Riley. The endocrinology team at Riley is “awesome,” Bona said. That includes Dr. Tamara Hannon, who currently sees Mackenzie.

After Mackenzie complained that her back hurt, doctors found the 3-year-old’s A1C (a blood test that measures a person’s average blood sugar levels over the previous three months) was elevated. A normal A1C level is below 5.7%.

She is now on a continuous glucose monitoring system but does not require an insulin pump yet.

As lost as Bona felt when her oldest child was diagnosed with a lifechanging illness, she feels better equipped to handle Mackenzie’s care. But she knows there are other parents out there who could use some extra support.

“I know when Zayden was first diagnosed, I wish I would have had a little bit more support, somebody to talk to, to tell me it’s going to be OK. That it’s not going to be completely hard forever,” she said.

“It does get better. It gets easier.”

Bona said there is no history of type 1 diabetes in her family, but she did have a rare autoimmune disease (pulmonary hyalinizing granuloma) when she was 15, requiring her to spend much of ninth grade at Riley.

“Dr. Susan Ballinger (pediatric rheumatologist at Riley) saved my life. She’s an amazing woman.”

The National Diabetes Statistics Report 2020 states that around 210,000 children under the age of 20 in the United States have diagnosed diabetes. Type 1 is much more common in young people; however, the rates of both types in young people are increasing.

The disease can appear at any age, but there are two noticeable peaks. The first occurs in children between 4 and 7 years old. The second is in children ages 10 to 14.

Zayden is learning to live with his diagnosis, but it hasn’t been easy on him or his family.

That’s why his mom leans on her faith for strength and encourages others to reach out for support if their child is facing a lifechanging diagnosis.

“Zayden is definitely my superhero.”

Learn more about Riley’s diabetes care program here.

Torry Latello can win you over with his smile. The 13-year-old son of Chris and Sarah Latello is nonverbal, but that smile says a lot.

“He is very gifted at stealing hearts,” says his mom.

Torry, who has cerebral palsy and uses a wheelchair, came into the couple’s life at age 2½, and they officially adopted him at age 3 to join three older siblings at home.

That’s when Riley Children’s Health became a big part of their lives.

CP is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is caused by abnormal brain development or damage to the developing brain before, during or after birth.

For Torry, it means seeing a team of specialists at Riley frequently to manage all of the medical issues associated with CP. Within the past year, an additional team of specialists has come forward to support Torry and his family – Riley’s palliative care team.

November is National Hospice and Palliative Care Month.

“That’s the most incredible team in the hospital,” Sarah said. “I cannot say enough good things about these people.”

Like most people, Sarah at first was confused when the family was referred to palliative care.

“I always thought palliative meant near death. I had no idea that it actually means fighting for life and for quality of life.”

Dr. Laurie Jacobs, clinical director and attending physician for Riley’s palliative and hospice care team, explained that end-of-life care – or hospice – is a relatively small part of what they do, though it looms large in people’s perceptions.

To be referred for palliative care, a patient must be suffering a serious illness, though not necessarily a terminal illness. Supportive care can be offered alongside potentially curative treatments, Dr. Jacobs said.

“We are focused on supporting the patient and family, as well as symptom management and medical decision-making.”

Hospice care, on the other hand, is available to a patient with a life expectancy of six months or less.

Dr. Jacobs joined Riley about a year and a half ago after completing her fellowship at the University of Alabama at Birmingham. Before that, the University of North Carolina School of Medicine graduate completed training in pediatrics in Pittsburgh and worked as a NICU hospitalist for several years.

All of her experiences eventually led her to the palliative/hospice medical specialty.

“People think it’s really strange sometimes that I think I have the best job in the world, and that’s because they don’t always understand what it is that I do,” she said.

“There are lots of kids who are seriously ill, and we can’t always do something about their illness, but I can help change the way they and their families experience their illness and support them through that process, whatever the outcome will be.”

That support has meant the world to the Latello family, especially in the past few months when Torry was admitted to Riley multiple times.

“Since spring, things have been really difficult with Torry,” Sarah said. “I remember them (the palliative care team) telling me they were available 24/7, and I thought that was crazy.”

But when she had to take her son to the emergency department a few weeks ago, Dr. Jacobs met them in the ED with snacks and a phone charger, figuring both would come in handy.

Dr. Jacobs waited with the family for the emergency physician on duty because Torry’s condition is complex and she wanted to explain his situation, Sarah recalled.

“The relief of having someone do that for me was huge. They are more than doctors – they are friends,” she said.

What she appreciates most is how the team works with other teams in the hospital, looks at the big picture and fights for what’s best for Torry.

“They really fight to know our family and our wishes for him. They know how to fight best for us.”

While the team doesn’t have a clinic per se, they “drop in” to appointments that patients have with other specialty physicians to ensure that those medical teams focus on what’s most important for each family.

“We get to know our families, sometimes for a long time, and sometimes our time with them is shorter and more intense,” Dr. Jacobs said. “It is an honor to be a witness to their journey and to make sure we’re supporting our kids and our families as well as we possibly can.”

Besides Dr. Jacobs, Riley’s palliative/hospice care team has grown and evolved over the past year to include: Dr. Jessica Zavadil, attending physician; Amy Haskamp and Kortni Haupt, advanced practice providers; Elisa Harris, nurse navigator; Kelli Cloud, practice administrator; Alisha Fuino and Ellen Mail, clinical social workers; Shannon Lytle, senior administrative assistant; and Dr. Jason Niehaus, interim division chief.

“We make sure that every day we have with them and their families, that given the constraints of their illness, they are having the best quality of life they possibly can,” Dr. Jacobs said.

Navigating her child’s serious illness is hard enough, Sarah said. So having a specialized team come together to support Torry and the family means the world to her.

“I want to tell everybody about them,” she said. “All these years I had no idea. They came at the time I really needed them.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org