Wyatt's Story

We had thought that we already had our "hiccup" for the pregnancy after we all caught a bug at the end of February and had to push this appointment back a week for Steph to recover.

Assuming everything would have been just fine, like the first time, we thought nothing of this seemingly routine appointment.  After what seemed like a relatively quiet assessment from the Ultrasound Tech. we started to get a little worried.  At all of the ultrasounds with our first child the technician was always super bubbly and commenting on how "cute" and "perfect" the baby was and we were wondering why this wasn't happening this time.  It wasn't until the specialist OB/GYN came in to deliver the devastating news that they had detected some "anomalies."  In the ultrasound they saw that the baby had a clubfoot, a missing kidney, a small chin/jaw and a possible heart anomaly.  We were crushed.

We were then sent a week later to another specialist to confirm these findings.  The next week, waiting for that appointment was agony as we had no idea what all of these findings meant. At the next appointment they did another ultrasound and confirmed what the first doctor had seen.  It was at this time we were ushered to a small room to speak with a Medical Social Worker.  It was there that she explained that it was "time for us to start grieving a 'normal pregnancy' as these findings were most likely pointing toward a not great outcome.  To say we were shocked and crushed is an understatement.  We were then faced with the decision of what to do moving forward, do we continue with the pregnancy? Do we do genetic testing? Is this dangerous for mom and/or baby?  We left with 1000 questions and not many answers.  After deciding to move forward with some testing and to let the pregnancy run its course the next few months were filled with many many appointments, ultrasounds, heart echos, and some scary moments.

Flash forward to Thursday, June 30th and a baby boy was born at 8:38am via Cesarean. The first few moments were very stressful and scary as many specialists like Neonatology, Pediatric ENT, and Pediatric Cardiologists were all standing by to assess the new baby.  After initial assessments were concluded our original findings were confirmed: small chin/jaw & narrow airway, club foot, missing kidney and possible coarctation (heart defect).  We were able to confirm these things but still were not able to determine what was causing all of these issues.

Because he had fought so hard to get here and we knew he had so much more to go through, we named him Wyatt, which means "little warrior" or "brave in battle." 

On Wednesday July 20th we met with a few doctors and the Genetics team here at the hospital. At that time we learned that Wyatt has a very rare genetic condition called “TARP Syndrome.” This condition affects many parts of the body and more specifically tends to have a strong effect on lung development and functionality. Essentially, babies with this condition are missing necessary DNA/Genetic information that operates certain functions within the body. It’s like reading through a recipe to make bread and turning the page and halfway down the recipe stops - in this case, you cannot make the bread.

The prognosis of the diagnosis is that most babies do not make it through the pregnancy. Statistically speaking, the next majority don’t survive through infancy. If they do, they have a lot of medical conditions that require them to be on constant intervention throughout the duration of their lives. Looking at what has happened previously to other babies, with this condition, the team does not anticipate that Wyatt will be with us for more than a few months. Essentially, they say, that looking at the numbers there is barely a 1% survival rate for this syndrome.

Over the next several months we continued to fight with our little warrior.  Our motto and theme throughout this endeavor was that we were going to follow his lead.  We would observe and take his cues and give him what he needed, whatever that might be.  If Wyatt showed us that he wanted to continue to fight, we would be right there with him.