“They are some pretty fly kids”

Patient Stories |

01/24/2024

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Preemie twins with chronic lung disease are supported by a multidisciplinary team in the Riley BPD Clinic.

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

When Teela and Taylor Hamilton’s twins were born at just 23 weeks, they had no idea the long road ahead of them. They weren’t sure their babies would even survive.

But to look at those twins today as they close in on their 2nd birthday, TJ and Zander Hamilton are proof that good things come in the tiniest packages.

Born in Evansville four months prematurely, the baby girls each weighed 1 pound, 2 ounces, not bad for twins that early, but so very small, with all the risks that come alongside preemie births.

The infants were airlifted to Riley Hospital for Children on that February day in 2022. They would spend the next eight months in the hospital before being discharged 12 days apart in October 2022.

The bonds both babies and moms made during that time remain strong.

“Our NICU nurses are still in our lives today,” Taylor Hamilton said. “We love them so much; they’re part of our family.”

Since then, the twins have become regulars at Riley, participating in the multidisciplinary BPD (Bronchopulmonary Dysplasia) Clinic, where they see multiple specialists during one visit, including pulmonary, respiratory therapy, general pediatrics and dietetics.

Both girls have feeding tubes and chronic lung disease, not uncommon in preemies. TJ came home on supplemental oxygen but no longer requires it, while Zander has a tracheostomy due to a narrowing of her airway.

BPD is a form of chronic lung disease that affects newborns, especially those born prematurely who need oxygen therapy. In BPD, the lungs and airways are damaged, causing tissue destruction in the tiny air sacs of the lungs.

The Riley BPD clinic was established in early 2020, just before the pandemic changed life as we knew it.

Pediatric pulmonologists Dr. Gregory Montgomery and Dr. A. Ioana Cristea serve as co-directors of the clinic, which sees more than 300 patients in the Riley Outpatient Center.

Dr. Montgomery explains why it’s important for patients with BPD to receive complete care in the clinic:

“Babies who are born really prematurely, when they’re in the NICU, we all focus on their breathing problems, and when they go home, they have a number of other problems that are all interrelated. So being able to come to a clinic like this where we can try to address as many of those problems at once and all talk together is really important,” he said.

“Feeding and growth are just as important for their breathing doctor as their breathing treatments and medicines, so being able to focus those therapies is going to help them grow and get bigger, better and faster.”

The hope is to keep them out of the hospital, he said, and collaborative care is critical to that end.

“I’ve been here almost 19 years, and this is the first time we’ve all been able to do all of this together,” Dr. Montgomery said.

When he walks into an exam room where Teela and Taylor are juggling the twins on a recent Friday, trying to keep them entertained with songs on their phone, Taylor looks up and breaks into a grin.

“Hey sweetie,” she says.

“We get to know our families well here,” he says by way of explanation as laughter breaks out.

Just like the pediatrician who saw the girls earlier in this appointment and the nurse before her, Dr. Montgomery goes over each girl’s chart and asks relevant questions about their sleep, feeding, activity, medications and recent hospitalizations.

Zander spent several days in the hospital in October after coming down with RSV, while TJ was able to weather the illness at home.

As he examines Zander, she gives the doctor a small smile, but that can devolve just as quickly into tears. You can’t hear her cries because of the trach, but she still makes her displeasure known.

“I promise there’ll be a day when she has a cold and she is not in the hospital,” Dr. Montgomery said.

The Riley team has been a lifeline since the girls were born, both parents say. In fact, the family moved from Evansville to Indianapolis to be closer to the hospital, where they knew their daughters would be receiving much of their care.

“The team is amazing,” Taylor said, adding that BPD nurse navigator Traci Dayhoff and nurse Ashley Burskey are only a text away when either of the twins’ moms has a question.

The girls are fraternal twins, so not identical, and their personalities are like night and day, their moms say.

“They are completely different,” said Teela, who gave birth to the twins. “Zander is the class clown. You can’t hear her because of the trach, but she makes funny faces and makes us laugh.”

TJ, on the other hand, is quite talkative, Teela said. “She is our very loud baby. She doesn’t know a stranger.”

“I was happy we had twins,” Taylor said. “I always wanted a couple of kids, but with twins, I prayed they would be totally different. They definitely are.”

Developmentally, Zander is walking well, while TJ, who also has cerebral palsy and recently was fitted with a brace, is taking baby steps and using furniture to stand upright.

“PT is working with her to get her moving and grooving,” Taylor said.

In her time with the family during the clinic appointment, Dr. Susan Gaston, a pediatrician, encourages a lot of face-to-face interaction with the twins and less screen time and suggests the parents continue to slowly introduce more foods to TJ to help her adjust to life without a G-tube someday.

Preemies often have hearing loss, so that is something to be watched, Dr. Gaston said, putting in a referral for a hearing test for both twins. Hearing loss could affect speech development.

Any delays the girls might have could be strictly physical or neurological, Dr. Gaston said, adding that a neurological exam scheduled in March can tease out any problems.

“We do all these things just to be sure we are not missing anything,” she said. “Both have come a long way, and you guys are taking amazing care of them.”

Without missing a beat, Taylor said, “They are some pretty fly kids. We’re not scared. Considering that some people thought they wouldn’t make it and all the things they have been through, more than the average human being will go through in their lifetime … it’s alright, no worries. We’ll be right beside them every step.”

Zander had a follow-up appointment last week to see if she could tolerate removal of the trach, but she wasn’t quite ready yet, Teela said, adding that she might need an airway reconstruction down the road.

Both parents are taking that news in stride.

“We know the trach will come out some day. We’re not worried,” Taylor said.

“We have been jumping over hurdles since they were born,” Teela added. “This is just one more and we’ll make it. We always do.”

Even worries about speech development don’t faze the couple.

“I think she’ll be fine,” Taylor told Dr. Montgomery. “When you guys take it out and she knows she has a voice, she’ll say, ‘Hi Dr. Montgomery.’ We know she’s talking; you just can’t hear her.”

After nearly two years of ups and downs, the Hamiltons continue to count their blessings and share their story in hopes that it might help other parents.

“Riley definitely saved our babies,” Teela said, “so we love to share their story.”

The pulmonology program at Riley is ranked eighth in the nation in the most recent U.S. News & World Report’s hospital rankings.

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

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