Aiden’s Story - Congenital Diaphragmatic Hernia (CDH)

On December 29, 2017 (Friday before New Year's Eve), Nathan and I headed to our scheduled anatomy scan. We were so excited to find out if we were having a baby boy or girl. On the way to the appointment, I told Nathan that I didn't care if it was a boy or a girl as long as we had a healthy baby. The scan began as we anxiously waited for the gender reveal. We were so ecstatic when the ultrasound tech told us we were having a baby boy!! Nathan was so proud. I could see it on his face. Things soon changed quickly. Unfortunately, we got a lot more than we bargained for that day. At the end of the scan, the doctor came into the room and informed us that our baby boy had a Congenital Diaphragmatic Hernia, meaning that his stomach was in his chest and his heart was shifted to the right. He then referred us to an MFM high-risk pregnancy doctor. We had never heard the letters "CDH" before. We didn't even really know what it meant. It sounded treatable, but we were told not to go home and Google it, which is exactly what we did! We soon learned that it was a life-threatening condition with a low survival rate. Our cloud 9 that we were on after finding out we were having a boy was yanked out from under us, and we were devastated.

We waited a long month to get into the MFM specialist, and, in the meantime, we did our own research. I began to follow a local babies' CDH story and commented that we were recently diagnosed and that we were looking to them and their story for hope and support. Aimee, from Tiny Hero, saw my comment and private messaged me and told me that she saw where we were recently diagnosed and that she would like to send us a care package. She explained that she was representing an organization called Tiny Hero and that they were there to help and provide hope for families in our situation. The care package we soon received was very informational and helpful. After a month of waiting for our initial appointment with the MFM doctor, we were told that our baby was a severe case, but that they were able to help us. We made plans to deliver in Pittsburgh, PA. 6 weeks later, on February 21, 2018 (a date that will forever haunt me), we were told that the numbers had gotten worse. There wasn't anything they could do to help our baby boy, and we would need to make plans to call hospice and make our baby comfortable when he was born. We refused. We pushed through some major hurdles, including considering going to CHOP (Philly) to have a FETO procedure done.

We went home from that devastating appointment, referenced the Tiny Hero information, and immediately decided to travel to St. Petersburg, FL, for a consultation at the Johns Hopkins All Children's Hospital. After traveling to Florida for our initial consultation and meeting Dr. David Kays, we received a 90% survival rate when we were previously told less than 30% or worse! We returned home to West Virginia with the good news and quickly made plans and arrangements to travel back to Florida for the birth. We also were able to easily make a reservation for the nearby Ronald McDonald House for our stay.

I returned to Florida on April 19, 2018, to be there before going into labor. The induction was scheduled for Sunday, May 21, 2018, and I had Aiden at 3:53 pm on Monday, May 22, 2018, via C-section. To our surprise, he came out kicking and screaming, as we were told not to expect any sound. He was immediately intubated and stabilized, and placed on ECMO at three hours of life. He then had his repair surgery done the following morning. Aiden spent 10 days on ECMO and was then moved from the CVICU up to the NICU. He spent 74 days in the hospital. Tiny Hero gave us the information that we needed to decide to travel to Florida to not only give our baby boy the best odds of survival but to thrive!