Kennedi's Story - Congenital Diaphragmatic Hernia (CDH)

Chris and I went for the routine anatomy scan and we were so happy to hear that we were going to have a girl! However, then the tech said she needed the doctor to make sure they had all the scans they needed. When the doctor came in I could tell by her facial expressions that something was wrong. Very wrong. She then said your baby has a hole in her diaphragm and these babies usually don’t survive. My heart felt like someone had stopped it and then shocked me back to life. After that appointment I began going for ultrasounds biweekly and every scan I was reminded that it was still not to late to abort the pregnancy. They kept telling me that my baby would never have a normal life. I went home and the first thing I did was go to instagram and typed the hashtag #CDH. I started to find other families and their babies were ALIVE and crawling. They looked just like normal babies! I found Annie Zolman, Tiny Hero, and lots of other moms! They all had something in common- their babies were alive and were delivered by a man named Dr. David Kays, but he was at Shands hospital which was 4 hours away. I told Chris and my mother that’s our doctor we’re going to deliver there. I didn’t know how, but we were. When I told my doctors at Tampa General they still insisted she probably won’t make it to birth or will die short after. They didn’t give me any hope, so I went home and cried. I didn’t have a baby shower and no maternity pictures. It felt like CDH robbed me...but did it? Annie Zolman reached out and gave me a phone number for Joy Perkins. I called and she started to tell me her and Dr. Kays were actually relocating to St. Petersburg which meant they were now 45 mins away as opposed to 4-5 hours! She then answered every question I had and gave me the hope I desperately needed. She believed in my baby and their ability to save her! I cried and thanked God! 2 weeks later I met Dr. Kays and Joy. They ordered an MRI and Kennedi had liver up which made her more severe once again my heart sunk. 

April 27, 2016 I was super nervous for my scheduled c-section, but once it was over Kennedi was here and putting up a good fight! She was 6 pounds 5 ounces and she also came with hypoxia, respiratory acidosis, neonatal respiratory failure, and the doctors let me know that Kennedi was EXTREMELY SEVERE. She had way more liver up then expected along with her bowels. She was placed on ECMO at less than an hour old and had her repair surgery was done at 6 hours old while on ECMO. She stayed on ECMO for 13 days. 95% of Kennedis’ left diaphragm was missing and Dr. Kays said her lungs where so small they were nonexistent. During Kennedi’s 85 day stay she became septic at 2 months old Genetics team also tested Kennedi and we found out she has a chromosome deletion q9 that could have been the cause of her CDH. As well as a syndrome called Loeys Dietz syndrome with Aortic root dilation. Kennedi was discharged on .25 liters of O2 and remained on it for 4 months. Now she is a feisty 2 year old who smiles non-stop. She will always be known as the baby with the low PH and for her hair of course! She’s currently in physical therapy and speech therapy, doing the things that my prior MFM said she would NEVER do!