Aiden’s Story - Congenital Diaphragmatic Hernia (CDH)

My name is Brandi Barefoot. Chris, my husband, and I were excited to start our family 10 years ago. We were excited for what a new baby would bring, but little did we know the terrifying news we were about to receive at my 18-week ultrasound appointment on Christmas Eve Day. My husband and I excitedly awaited the news of the sex of our baby. As the ultrasound technician took the appropriate measurements, her normally bubbly personality, was quite dim. I don’t think I noticed it in the moment, but looking back on it I can tell she saw something was very wrong and was quiet only until she smiled to tell us we were having a BOY! She printed some pictures for us and said she would be right back. That is when the doctor came in and delivered the news. I remember the shock and numbness that overtook me as I sat there trying to take in the words he was saying. He wrote some information down and said he was sending us to see a pediatric surgeon and OB at a bigger hospital a couple hours away. When I got home I immediately googled my baby’s condition, Congenital Diaphragmatic Hernia. After reading everything I could find on CDH including the 50/50 chance of survival I was devastated. About a week later I was at Sacred Heart Hospital in Pensacola, Florida talking to a team of doctors who basically told me their facility was not equipped with what is needed to give a CDH baby the best chance for survival. They rattled off a couple hospital names and sent me on my way. Again I spent more time researching until I found a link for Dr. David Kays at Shands Hospital in Gainesville, FL.

A few weeks later my husband, mother, mother in law and aunt hit the road to have a consultation with Dr. Kays. He explained what happens when a baby has CDH, the best case and worse case scenarios, and then gave us what he believed to be my son’s survival chance. 92% chance of survival. Aiden was considered in the moderate range of severity, with his stomach, spleen and part of his small intestine in his chest cavity. Chris and I went home and the spent the remaining weeks trying to financially and mentally prepare ourselves for what was to come. Dr. Kays ordered me to come stay in Gainesville a month before my due date in case I went into early labor. I arrived at the Ronald McDonald House around the corner from Shands on April 14th. I had many appointments that month so they could monitor me and Aiden. In my first days there, I learned 3 babies had just been born with CDH. Another woman whose baby also had CDH, who roomed across from me, was set to be induced the next week. We were all each other’s support system away from home. Another family expecting a CDH baby came in two weeks before my due date. I remember someone saying the hospital didn’t normally have so many CDH babies at one time. 

I was scheduled to be induced on the 5th of May so Dr. Kays and his team would be ready for Aiden’s arrival. Giving birth to a baby is already scary and nerve wracking, but I was surrounded by so many doctors and nurses as I gave my final push that I felt better knowing they were there to save my baby. Like many CDH babies when they are born Aiden didn’t cry. They held him up for me to see him before they swiftly carried him over to be intubated. He was rushed out of the room to be further evaluated and I didn’t get to see him until the next morning. He was stable and strong enough for surgery at 2 days old. After surgery Dr. Kays and his team brought us in to discuss the results of the surgery. They had hoped to be able to do a minimally evasive surgery to do the repair, but quickly discovered he also had malrotation of the intestines therefore Dr. Kays had to open Aiden up across his abdomen to correct that as well. In addition to left CDH and malrotation of the intestines Aiden also experienced respiratory distress, requiring intubation which stepped down to CPap and then finally nose cannulas, also hypotension, indirect hyperbilirubinemia, absence of pericardium, gastroesophageal reflux and a heart murmur. Aiden spent 16 days in NICU III and 14 days in NICU II where he was discharged on June 3, 2009. We made our way back home to Panama City from Gainesville elated and scared. Aiden was on multiple medications for his reflux as well as O2 at the time of his release. 

The first couple of years were the hardest for Aiden. He was constantly sick and even hospitalized at 6 months old with RSV. By age 4 he already had three sets of PE tubes inserted and his adenoids removed. He received OT at 3 months of age and resumed again at 8 months of age along with PT, both which he still receives now at age 9. He also began speech therapy at 18 months and was diagnosed with Childhood Apraxia of Speech at age 3 and continues receiving both private and state provided ST. Since then he has also been diagnosed with Dyspraxia, ADD, and suspected Dysarthria. Something I have learned through my son, and other children who experience medical issues, is that children are so resilient! Even after all Aiden has been through he is still a bright, sweet, imaginative and inspirational little boy! We have talked to him numerous times regarding CDH and his surgery. He knows what his abdominal scar means and what Dr. Kays means to him. We are so blessed and thankful for every day with our Tiny Hero!