Hazel's Story - Congenital Diaphragmatic Hernia (CDH)

My name is Kayla. I am from Georgia and this is my daughter Hazel. When I was 16 weeks pregnant we paid to find out what our sweet little baby would be. After finding out that we were having a girl we were sent out into sub wait and was eventually called back to talk to a doctor which wasn’t normal so I knew right there something had to be going on. The doctor comes in and tells us that they found some fluid around her lungs during the ultrasound and would be sending me to a specialist in Atlanta. I went to Atlanta about a week after this appointment and had many ultrasounds, tests, and even an amniocentesis to rule out different things. The amniocentesis came back normal and so did the rest of the tests. The doctors were completely stumped on what the fluid could be from but at our following appointment we went to monitor the fluid when the doctor noticed something new. There were some liver sticking up through Hazels diaphragm. The doctor explained to me what CDH was and what would be happening from that point on. We went under a little procedure to try to remove some of the fluid to give her lungs some extra room but he couldn’t get the needle into her chest because the only space he could find was like 0.43cm and he would have hit her heart, her lungs or her liver. He then brought my parents into the room and started saying that from that point forward all they could do was monitor her and that his optimism for her had decreased. He then said that her chances of survival were very low and before he could mention termination, I let him know it wasn’t an option.

I had a few more appointments in Atlanta before they let me meet the lady who would be delivering her and after meeting her and her telling my husband to “Be prepared to watch her die.” Because she had only seen two cases of CDH and neither survived. After that appointment we decided we would be looking for another doctor who would be willing to help us and at that point we had already heard of Dr. Kays from other CDH parents and they helped send me in the right direction. I am very young, I was only 18 at the time and I am now 19 but we didn’t have jobs and I only had Georgia Medicaid which wouldn’t be covered in Florida. I contacted my governor and he contacted Medicaid and they signed a single case agreement to cover my labor in Florida. When we went to meet Dr. Kays he told us that hazel had a 90% chance of survival (This was just based on my ultrasound. No MRI was done just yet). On July 13th we made our move to Florida and stayed in a hotel for a night and then got into the Ronald McDonald House. I went two days later to have my MRI. Dr. Kays called me the week after and explained to us that Hazel was not only right side like they thought. She was Bi-lateral. She had liver coming in through the right and left side. He told us he still felt as though she had good chances but wanted to be honest and let me know he had never had a bilateral baby survive. They got everything set up for my induction and I went in to start the induction process on August 2nd.

I had Hazel August 5th at 9:58am. She wasn’t doing well at all after birth and they were really thinking she was going to need ECMO. They put her on the oscillating ventilator which helped her lungs open but then she tried working over that ventilator so they put her on the conventional ventilator. Hazel had her repair surgery at 9 days old. Dr. Kays said her hole was huge and she had a full right lung and a nub for a left lung. He told us how Hazel really was a unique one, she ended up being bi lateral which is obviously the worst case but had the best type of hernia to have which was the Morgagni hernia (An opening through the front instead of the back).

Hazel breezed through the remainder of her time in the NICU and shocked everyone because of how well she was doing. She came home at 43 days old with a little bit of oxygen. She came off of all breathing support two months after we brought her home and is now about to reach her second birthday!