Tyler’s legacy: A tragic start reveals hope and grace

By Heather Svokos

In November 2014, in a labor and delivery room inside UT Southwestern Medical Center’s St. Paul University Hospital, two parents cried softly after Tyler Ray Zapotocky entered the world and lived for just 32 minutes.

Whitney and Adam Zapotocky
Whitney and Adam Zapotocky at the Dec. 8 ceremony for the unveiling of their son’s floragraph, which was displayed on the Donate Life float in the 2017 Rose Parade.

But more than two years later, baby Tyler’s legacy is going strong through neonatal organ donation and his presence literally loomed large in the 2017 Tournament of Roses Parade. Tyler’s image was one of 60 to be part of the Donate Life float in support of Donate Life Texas and the Southwest Transplant Alliance. The images were “floragraphs” – created with spices and other organic material – and his parents, Whitney and Adam Zapotocky, along with several of their family members, attended the unveiling at William P. Clements Jr. University Hospital.

“For us to be able to share Tyler’s story, and for him to be honored on the float is truly a blessing,” Mr. Zapotocky said at the ceremony. “We’re proud, proud parents.”

Mrs. Zapotocky added with a smile: “It’s really cool that our kid has such a legacy.”

In June 2014, the Zapotockys of Rowlett were given life-changing news. They were at UT Southwestern for their 18-week prenatal ultrasound, which evaluates fetal development. The results were shattering. Dr. Robyn Horsager-Boehrer, a specialist in Maternal-Fetal Medicine, told them that their baby had renal agenesis, better known as Potter Syndrome, a condition in which a newborn is missing one or both kidneys. In the case of the Zapotocky baby, it was a fatal diagnosis.

As the pregnancy progressed, support at UT Southwestern came from many, including Dr. Horsager-Boehrer, Drs. Ann Lutich and Natalie W. Frost, as well as nurses, techs, and staff in Maternal-Fetal Medicine, Neonatal-Perinatal Medicine, and at St. Paul.

“The doctors and the medical staff showed us so much compassion,” the Zapotockys wrote on their blog. “They explained everything they could and took so much time with us. Looking back, it was a positive start to an incredibly difficult journey.”

They felt that if their baby was born alive, they didn’t want to waste an opportunity.

“We wanted as much good as possible to come from this little life,” they wrote.

They asked about organ donation – an uncommon question from people in their situation. The timing was uncanny. The Southwest Transplant Alliance (STA) had just been approached about a clinical trial involving liver cells in infants. STA is a non-profit organization that acts as a bridge between those who make the decision to donate their organs and those needing a life-saving organ transplant throughout much of Texas.

The Zapotockys’ army of care soon added more warriors. 

“We were so driven by the family’s desire that we wanted to make it happen for them,” said Judy Newell, a Registered Nurse who helps coordinate care for patients who have fetal anomalies. “Everybody pulled together and worked as a team, together with Southwest Transplant Alliance. It was a lot of work, but it all went very smoothly.”

When it was time to induce labor, Mrs. Zapotocky absorbed that process going on around her, and observed the UT Southwestern staff members at work.

“I watched them try to not be emotional so they could do their jobs very well,” she said. “But when they would leave the room abruptly, you kind of knew that: ‘OK, it’s bigger than us. We’re not the only ones who are sad. And they’re doing everything they can to take care of us and love us really well.’”

The Zapotockys have since become ambassadors for neonatal organ transplant, making frequent public appearances in support of Donate Life America and the Southwest Transplant Alliance.

Donate Life float
Photo courtesy of Donate Life Texas
UTSW was represented by a rose on the 2017 Donate Life float in the Tournament of Roses Parade on Jan. 2. The rose’s vial was signed by John Warner, M.D., Chief Executive Officer, University Hospitals. The Donate Life float won the Rose Parade’s award for excellence in presenting the parade’s theme, “Echoes of Success.”

“We want people to know that neonatal organ donation is a possibility,” Mrs. Zapotocky said. “After all of the tough times, and the tough decision … ”

Mr. Zapotocky finished her thought: “Tyler’s 32 minutes on earth stands for something.”

UT Southwestern has since performed five additional neonatal organ donations.

Mr. Zapotocky said it was rewarding to see the emotions felt by health care workers on display.

“It was great – even the day Tyler was born and afterward – to have them cry with us. You get down to the humanity of it,” he said. “You share some tears, and smiles, and eventually some laughs. It’s really special for us.”