Rose Bowl Parade honors legacy of local family’s infant son

Last year before Christmas, I wrote about Whitney and Adam Zapotocky and their experience with neonatal organ donation following the death of their son, Tyler Ray, shortly after birth. On January 2, 2017, their story will be honored nationally at the Rose Bowl Parade. Tyler’s image, along with other organ donors, will grace the Donate Life float. Organ recipients and living donors will accompany the float. Whitney and Adam continue to honor their son’s legacy by actively supporting organ donation and working closely with the Southwest Transplant Alliance.

To learn more about Tyler and the Zapotockys’ organ donation journey, read on for their story, told in their words.

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Our first pregnancy started with so much happiness. Our parents were going to be grandparents for the first time, and our sisters were excited about being aunts. Many of our friends already had children, so their excitement for us was off the charts.

We had our ultrasound appointment in June 2014. One set of parents and both our sisters came along, excited to find out whether we were having a boy or a girl. Our plan was to keep the news private with them and then throw a big gender reveal party a few weeks later.

Nothing seemed out of the ordinary initially. Our sonographer was quiet and was taking several screenshots, but because this was our first pregnancy, we didn’t know if that was normal or not. The sonographer told us she would be back with Dr. Horsager, whom we had never met before. When Dr. Horsager asked if she could speak to us alone, our hearts sank.

Dr. Horsager told us she suspected from the ultrasound that our baby was not developing kidneys. Without kidneys, there is no amniotic fluid, and without amniotic fluid, the lungs would not fully develop. It was a fatal diagnosis. That’s when our world came to a stop. We were speechless. It had only been two weeks since we shared our news with friends and made the announcement on Facebook that we were pregnant and expecting our first. We were on a roller coaster of emotions.

A new journey

We spent a lot of time with Dr. Horsager that day. She explained the situation to our family and answered our questions. An MRI test the next day confirmed our fears. The radiologist, Dr. Bailey, showed us the results and explained that although she could see our baby’s tiny adrenal glands, which usually sit on top of the kidneys, there were no kidneys. The condition is called renal agenesis, better known as Potter Syndrome.

The doctors and the medical staff showed us so much compassion. They explained everything they could and took so much time with us. Looking back, it was a positive start to an incredibly difficult journey. We were fearful. Twenty weeks is a long time to carry a child you know is not going to survive. Even if the baby survived the pregnancy, we knew there was a strong likelihood the baby would die during labor. If the baby survived labor, we were told the baby would not live more than 24 hours.

We felt that if our baby was born alive, it would be an opportunity that shouldn’t be wasted. That, in and of itself, was going to be a miracle. We wanted as much good as possible to come from this little life. We became determined to support the legacy our baby would leave behind. We asked about organ donation. No one in our situation had asked about this before, but in a stroke of divine intervention, the Southwest Transplant Alliance had just been approached about a clinical trial involving liver cells.

Many people put in so much hard work during the final two weeks of our pregnancy to make the donation a successful process. They told us people who had never worked together were now on the same team, all determined to make this happen. Everyone knew the reality of the situation. All the preparation would not matter if our baby was not born alive. And there were many more criteria that needed to be met for a successful donation.

At 41 weeks, our baby weighed just over five pounds. We set a date to induce labor. When the day came, we were scared but prepared for all the possibilities.

Leaving a legacy

Tyler Ray Zapotocky was born Nov. 5, 2014. We held him tightly, every passing second a precious memory. He lived for 32 minutes. The time we spent together as a family was a miracle. When he passed away, we knew he would need to go to surgery immediately. The joy we experienced with his birth was clouded by sadness, but we knew he was in good hands.

Doctors collected more than 2.4 billion liver cells from Tyler. Those cells are saved and will be injected into the liver of a sick child to help that child survive until a liver transplant can be performed. We know that even though his life was short, Tyler may help save another life.

We were overwhelmed with support, and we are forever grateful to everyone who helped us.

For Tyler’s funeral, we requested stuffed animals in lieu of flowers. Hundreds of them, some small and some huge, filled our house. Just a few days before Christmas, we donated them to Children’s Medical Center in Dallas in Tyler’s memory.

During our nine-month journey, Tyler made us stronger as a couple, made our extended family stronger, and impacted countless other people. Our hope is that parents hug their kids a little tighter, hold them a little closer, and always remember that the gift of life is precious.

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Tyler’s legacy extends to our practice at UT Southwestern. His family opened our eyes to new opportunities and changed the way we – obstetricians and neonatologists – look at these situations and the possibilities families may want to consider. Because of Tyler, UT Southwestern developed a program for families who want their newborns to be organ donors.

Since the Zapotockys’ experience, five other families in similar circumstances have chosen neonatal organ donation at Clements University Hospital after their babies’ deaths. In addition to helping children with congenital liver problems who are waiting for liver transplants, a young woman with renal failure is doing well after receiving both kidneys from one infant. Families also provided blood to researchers studying the diseases that their infants died from to help us better understand and prevent those conditions.

As another way to honor Tyler, Whitney and Adam have started a new Christmas tradition. Every year they ask family, friends, and strangers to donate stuffed animals to patients at Children’s Medical Center in Tyler’s name. They’ve donated a few hundred stuffed animals in two years and plan to continue this tradition. 

During this season, as we gather and celebrate with our families, let’s think about the incredible generosity these families have demonstrated. Because of their actions, we are better physicians, and other patients with heartbreaking news can benefit and find some comfort in very difficult circumstances. And it’s all because of the commitment and perseverance shown by Whitney and Adam in their quest to honor their son.