Darci's Story - Congenital Diaphragmatic Hernia (CDH)

On March 17th, 2016, I went in for an ultrasound. I had just found out I was expecting a girl. Then the ultrasound technician had told me she was having trouble seeing things, so she wanted someone to get a better look at the baby. It was this day I found out my daughter had a right-sided congenital diaphragmatic hernia and was giving an LHR of .3 and a survival rate of less than 20%, extremely low. After traveling to a few hospitals and even meeting with a CDH specialist, I was continuously told to terminate the pregnancy. Of course that was the last thing I would do. I set off on a journey with my mother to find someone willing to help my daughter. After contemplating the FETO procedure and posting about it on a CDH Facebook page, I was directed towards Doctor Kays, who was located in Florida.

Within a day, I was on the phone with Joy Perkins. She was calling my daughter by her name, Darci. She made me feel as though they would do whatever they could to help her.

After weeks of fighting with insurance, we made our way down to Florida all the way from our home in Michigan and met with Doctor Kays himself. He chatted with me for a long time and for the first time in a while, I had hope.

June of 2016, I returned to Saint Petersburg and awaited my induction. On July 11th, my sweet daughter was born.

She was placed on ECMO within hours of birth and was planned for her repair that following day. It was after her repair that Doctor Kays let us know she had a total of 70% liver in her chest! That is an insanely high amount, which also assured us she was extremely severe. Her ECMO run was a total of 12 days long and she remained intubated for 20 days before their first attempt at extubation, which sadly didn't turn out as we had planned. But Doctor Kays stayed calm. She was intubated again and after a total of 26 days she was officially successfully extubated and placed on CPAP. After a Nissen, G-tube and a total of 73 days later, she was discharged!

There are no words to describe just how thankful I am to have found Doctor Kays, Joy Perkins and the JHACH staff. I know without a doubt they are the reason my daughter is here today.