Mannix, who was born with intestinal atresia, is now a playful, active 2-year-old. His mom remembers those early days: “It seemed like our whole world shrank down to his hospital room.”
By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org
Like the toddler he is, Mannix Dillon veers from raucous laughter to pitiful tears in a matter of minutes while his mom is on the phone.
As Kena Ramirez Dillon is explaining how 2-year-old Mannix’ life started – with an unexpected diagnosis, surgeries and a four-week hospital stay – the little boy shows how life is going as he races around the family’s home, hopping from activity to activity, toy to toy, pausing only to cry when his mom prevents him from bothering his big brother’s stuff.
“He’s working through his feelings,” Ramirez Dillon said, as she holds her ground while he has a mini meltdown.
Soon enough though, Mannix is back playing, bouncing around the room and squealing as he sees a kangaroo on TV.
“He doesn’t walk anywhere; he prances,” she said, laughing. “He’s running around like a crazy little man.”
It’s a long way from where he started, Ramirez Dillon said, as she recalled first the concerned look on an ultrasound technician’s face a few weeks before her son’s due date, followed by the consult at Riley Hospital for Children and then the C-section a day later.
Mannix was born in early January 2022 with intestinal atresia. His intestines were blocked, preventing the bowels from emptying, a condition that can be deadly if not treated.
Ramirez Dillon and her husband, Kyle Dillon, both U.S. Navy veterans, learned a lot about their son’s condition in a short time.
“This was all new to us,” she said. “We went from being all excited about finally having another baby to this extra layer we had to absorb. You’re going about your life and something like this comes out of the blue. It seemed like our whole world shrank down to his hospital room.”
But they were still over the moon for their precious boy, and Mannix’ older brother couldn’t wait to meet him.
Mannix underwent surgery the day he was born so doctors could see how serious the blockage was. Dr. Troy Markel and team had to remove some of the newborn’s intestines to clear the blockage, leaving him with a condition called short bowel syndrome and an ostomy bag to collect bodily waste.
Born weighing 9 pounds, he dropped down to about 7 pounds after doctors drained excess fluid from his little body, his mom said.
The day after surgery, Mannix is pictured in what his parents lovingly refer to as his pirate stage – one eye shut tight while the other eye tracked them around the room.
What followed was a three-week stay in the NICU at Riley and another week on the hospital’s medical-surgical unit, during which time Mannix’ parents learned how to perform his ostomy care and IV feedings.
Because Mannix was not able to properly digest breast milk or formula and gain the nutrients he needed, doctors inserted a central line so he could receive IV nutrition, explained Dr. Charles Vanderpool, associate division director for pediatric gastroenterology and medical director for nutrition support and intestinal rehabilitation at Riley.
A month after Mannix was born, he went home to meet his big brother, and even though nine years separate the two, they are best buds, Ramirez Dillon said.
“Proud big brother Landon was so gentle with him,” she said. “When Mannix’ central line got infected, Landon is the one who noticed while holding his hands during an ostomy dressing.”
Those first six months or so of Mannix’ life were packed with procedures and appointments, and the little boy’s parents wondered when he would be able to eat like a typical baby instead of relying on IV nutrition and the few drops of breast milk that he could tolerate.
As happens sometimes with children with short bowel syndrome, Mannix also needed iron infusions, which took place in Riley’s outpatient infusion center, where other patients are receiving chemotherapy.
It was there that Ramirez Dillon began considering donating her long locks to a charity that makes wigs for people who have lost their hair due to medical issues. She plans to donate 12 inches.
But she wanted to do more. So, she has decided to use her skills as an artist to raise money for Riley.
“I decided I wanted to do a painting series, collecting stories from people about activities that helped them get through a difficult time,” she said.
She remembers the feelings of isolation she and her husband experienced, even while surrounded by support during their son’s time in the hospital. By taking people’s stories and relaying them on canvas or sculpture, she hopes to help others form connections to guide them through life’s twists and turns.
The idea is to have an exhibition and donate a portion of the proceeds to Riley.
“Giving back is something I like to try to do,” she said. “I thought I could use my work to do some good for the hospital that essentially saved his life.”
Following his ostomy take-down surgery and removal of his central line a few months after he was born, Mannix has blossomed into a busy toddler with an appetite for fun and food.
“He eats rice, steak, veggies,” his mom said. “He loves playing with cars, playing piano with his brother, coloring and attempting to play his brother’s saxophone. He hasn’t quite figured that out yet.”
It’s all music to Dr. Vanderpool’s ears. The GI and nutrition specialist said a lot of kids like Mannix who start off with IV nutrition end up staying on it for months and sometimes years.
“It’s really hard for the parents because it can be life-threatening, so it’s a high-stress situation,” he said. “When kids come off TPN (total parenteral nutrition), it’s just so fun to see them grow and develop and succeed.”
Dr. Vanderpool, who saw Mannix in clinic last month and will continue following him as he grows (patients are at risk for vitamin and nutrient deficiencies when they lose part of their intestines), said a scar on the little boy’s belly is about the only sign of what he has been through.
“He’s eating a normal toddler diet, his weight is excellent, and he’s very playful. A lot of times, kids who’ve been through medical procedures are really hesitant around physicians, but he was fairly at ease.”
All of it, Dr. Vanderpool said, is a testament to how proactive Mannix’ parents have been with his care and making sure he gets the nutrition he needs, and it’s an example of what teamwork can do.
“He’s received care through surgery, dietetics, the medical nutrition therapy team, GI, pharmacy, hematology and oncology,” the physician said.
“It’s a great example of what that partnership at a major institution can do for children, and the impact it can have on families.”
For Ramirez Dillon and her family, it’s simply a blessing.
“He’s living his best life.”
