John's Story - Congenital Diaphragmatic Hernia (CDH)

I had a normal pregnancy (my second one) and my 20 week ultrasound showed I was having a healthy baby girl. I went into labor 2 weeks early and I was admitted to hospital to have my scheduled c-section (because i delivered c-section with my first child). First shock was that my baby was not a girl, second shock was when they cut the umbilical cord, my baby turned purple. Luckily the neonatologist knew what was wrong and X-rays confirmed LCDH.

John was stabilized and transported less than a mile via ambulance to University of KY Children’s, where I was transported later that day. He’s repair surgery was 10 days later. Two more repairs were required due to him reherniating. All repairs were done within the first year. We spent 50 days in the NICU and came home on O2. We battled reflux and was again operated around 4 months old for a Nissen and a Mickey insertion.

We flew him to Boston children’s hospital to undergo a surgery to close an ASD. We battled RSV (twice). The second time was when he was 3 and we almost lost him. In fact, he was granted a Make-a-wish (trip to Disney) after he won the RSV battle. We have battled ph since birth and still do to this day, 19 years later.

When John was 9 he underwent surgery yet again for pectus excavating repair surgery. It was very successful and he was able to come off 3L of O2 after 9 years. The last 10 years, John has been truly lucky to live a “normal” life. He can’t play sports, and has recently been released from Cincinnati Children’s hospital and has acquired an ADULT Dr who will monitor his PH. He still has to take 3 different medications for PH that have helped to slow the progression of the disease. His dream is to one day be a sports broadcaster— and he is currently working for our local radio station selling ads and hopefully doing some broadcasting for them in the future. I realize not all CDH stories have happy endings and I am so very blessed and thankful to be his mom.