I was 20 weeks pregnant when I found out that my son had a birth defect that is fatal in fifty percent of the cases. My husband and I were told that our unborn son had a birth defect know as congenital diaphragmatic hernia or CDH for short. We had never heard of this defect; it sounded foreign to us. Little did we know then how familiar we would become with this acronym.
We learned that the earlier CDH is found the more unfavorable the chance of survival. In Jaxson's case his stomach, intestines, spleen, appendix and left lobe of his liver had all herniated into his chest cavity. His initial lung-to-head ratio which is a statistic often used to determine severity, but not survival was 1.13 when first measured. Anything above 1.0 is considered more favorable. He fortunately had no other anomalies such as a genetic disorder or heart defect. Given all of these factors our chance of survival was still under fifty percent.
We were heart broken and devasted by this news as any expectant parents would be. We leaned on our family and friends for support. We scoured the web researching every bit of knowledge out there on CDH. We turned our thoughts, energy and focus to Jaxson. We planned to do everything in our power to make sure he survived.
Ultimately we chose to put Jaxson's care in the capable and skilled hands of the doctors and nurses at Children's Hospital of Philadelphia (CHOP). They treat 40-50 cases of CDH annually, have led the way in CDH research and put us completely at ease with the next steps in Jaxson's care.
Jaxson was born on May 19, 2008 via c-section and was immediately placed on respiratory support; he had his repair surgery when he was only five days old. His stomach contents were brought down through the hole and a large Gore-Tex patch was placed to keep everything in place. The surgery was a success, but watching our baby going into his first surgery was tortuous. After the surgery, we had to watch and wait to see how he would respond and what the next steps in his recovery would be. It was a roller coaster of emotions for us, but we were determined to keep our composure and stay positive.
I was able to hold him for the first time when he was ten days old. He amazed us every day with his strength and fast-paced recovery considering the size of his CDH. His surgeon referred to him as a CDH ‘rock star.’ Our little rock star spent only 37 days in the NICU. I credit his successful recovery to a number of things, but primarily to the amazing care he received at CHOP.
Today Jaxson is a happy, healthy and talkative toddler. He's achieving every normal milestone for his age. We are so overjoyed with Jaxson's good health and feel very blessed to be his parents.
