Vance’s CDH Story
In 2015, we had no idea how hearing three letters together could knock us off our feet.
When choosing a name for our youngest son, we chose one that we felt would be strong, Vance. And soon after he was born, he demonstrated that tremendous strength. Vance was born full term, and from all ultrasounds and appointments, we thought he would be healthy with no complications. Yet immediately after birth, he was in respiratory distress and taken to the NICU.
Our delivery room physician assured us that he was probably fine, and it was all due to his quick delivery. The following 45 minutes felt like time stood still.
When the NICU doctor returned without our son, we were shattered. She came in to tell us he was born with Congenital Diaphragmatic Hernia (CDH) and was being intubated and prepped for transport to the Children’s Hospital of Pittsburgh. And then she left.
CDH? What is that? Immediately we turned to Google and felt despair, fear, and darkness.
But the next 21 days were truly miraculous. Vance had an LCDH with his stomach, intestines, kidney, and spleen in his chest, compressing his left lung and pushing his heart into his right lung. The surgeon and his team moved his organs back into place, closed his diaphragm, and reinforced it with a patch on day two. Each day, the NICU doctor would set a goal for Vance to hit, such as lowering ventilator pressure, being extubated, then moving to room air, and then on to feeding. With each goal given, Vance would hit it. Day 21, we were on our way home!
We were still terrified. Googling way too often and still coming up with despair and darkness regarding CDH and nothing but our faith to lean on, which would carry us through. Six months after Vance was born, we discovered Tiny Hero – and the curtain was pulled back to allow the light to shine through on a diagnosis that felt so dark. Who is Adam? Who is Dr. Kays and his amazing medical team? And the CDH families and kids? I felt so connected even though we were complete strangers.
Vance continues with follow-up appointments with our surgeon to see how he is doing. And with each appointment, his surgeon continues to reaffirm to us that he is healthy and growing. And that we should allow him to do whatever he wants physically because he has no restrictions. He has proven that he can do just that. Vance is active and healthy — he plays ice hockey and soccer and enjoys competing in 5K runs. He is outgoing and social, always making others laugh and smile. His pediatrician once told us with CDH, no two stories are the same, and Vance is writing his own.
We are forever grateful for the medical care we received at UPMC Magee-Women’s Hospital and Children’s Hospital of Pittsburgh. We will continue to spread awareness and hope to all CDH families, and we are so thankful to be a part of Tiny Hero!
