NICU support helps keep their child’s memory alive

Jen Wallin and her husband had one of the worst moments of their lives at the Bryan Medical Center neonatal intensive care unit (NICU). Their son, Thomas, died of a genetic disorder a few days after his birth. That was over a decade ago; they have since worked tirelessly to support the NICU.

Thomas Wallin

“I remember the staff taking such great care of Thomas while he was alive,” Jen said. “Giving back to them was something we could do that would hold a lot of meaning.”

Jen and her husband, Josh, have two more children – Noah, 7, and Bentley, 5. Bentley also was born with medium-chain acyl-coenzyme A dehydrogenase (MCAD), the disorder that claimed his brother’s life. MCADD is an inherited disorder that prevents the body from breaking down certain fats and turning them into energy. It is present from birth and is a lifelong condition.

The family celebrates Thomas’ birthday every year in various ways, including family trips and bringing birthday cake to the NICU. The family also has put on a “Run for Thomas” for the last 10 years at Holmes Lake to raise awareness about MCADD and remember Thomas.

Proceeds from the run go toward care packages that the Wallins donate to the NICU and pediatric unit. The packages include items such as baby blankets, stuffed animals, coloring books, lotion and snacks. Jen also handwrites notes for each package letting the family know that they are not alone on their journey. Finally, a card explains the meaning behind the package and informs each family of Thomas’ story.

The Wallin family at the "Run for Thomas" event

One of the trees in the NICU healing garden was donated in memory of Thomas. And every year, the family also donates items from the NICU’s wish list, such as artwork and mobiles.

Jen said she and her husband are so involved with the NICU for many reasons, including feeling close to Thomas and helping other families facing the uncertain health of their newborns. The couple experienced that uncertainty firsthand during Thomas’ few days on Earth.

After a C-section, medical staff conducted standard newborn screenings on Thomas with all looking well. But then Thomas stopped breathing on his third night in the hospital.

He was rushed to the NICU, where he was revived. After further testing, he was diagnosed with MCADD.

He began breathing on his own again, and by the next day, he seemed to have stabilized. The couple were resting elsewhere when they were asked if they wanted to hold Thomas for a while. By the time they arrived back at the NICU, staff were performing CPR on their newborn. He passed away a few hours later.

Bentley struggles to maintain his body temperature in the heat, and he drinks a lot of Gatorade to keep his sugar level high. Otherwise, he is a normal, happy-go-lucky 5-year-old, his mom said.

“He’s full of the bumps and bruises from the playground that a normal 5-year-old has,” she said.

Jen is still in touch with many of the NICU nurses from those tragic few days. They often text photos of Thomas’ tree glowing through the night and ask her how she and her family are doing.

Her family’s connection to Bryan Medical Center keeps her tethered to her beloved first child.

“I always think to myself, ‘What am I doing for Thomas today?’” she said. “We’ve always said we’ll do something good throughout the day to honor and cherish him.”

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To learn how you can support the Bryan NICU, please contact the Bryan Foundation staff by calling 402-481-8605.