Xavier's Story - Congenital Diaphragmatic Hernia (CDH)

I was 18.5 weeks pregnant (single mom) when I found out my baby had Congenital Diaphragmatic Hernia (CDH) and that his LHR (lung/head ratio) was 0.8 with intestines and stomach up at the time. That day I had an amniocentesis so I could possibly qualify for the FETO surgery at Texas Children’s Hospital in Houston. All amino results came back normal so off to Texas I went. I left my other kids with friends and family members so that my baby could have the best care possible. When I got to TCH the first 2 days were filled with appointments and testing and I found out that not only was his stomach and intestines up but so was his spleen and part of his liver.

The following week I had the FETO Surgery and I stayed in the hospital till I had to have an emergency C-Section 9 weeks later. My baby boy went 5 days before he had to be put on ECMO and less than 2 days after being on ECMO he had his repair surgery where we found out he was missing 75% of his diaphragm.

He was intubated for a little over a month and then on Cpap for over a month before they tried low flow nasal cannula. After 3 days on that he had a major setback and had to be put back on Cpap (almost needed reintubated). After a few weeks on Cpap again they seemed him to high flow nasal cannula where he did well and was eventually weened to low flow.

After 17 weeks in a level 4 NICU he was moved to level 2 and 2 weeks later he was discharged from the hospital and we made our way back home to Kansas. At discharge he was on a 1/4 liter of oxygen, had an NG tube, and on 4 medications that he took numerous times a day. He is almost a year old now only on oxygen at night and 2 of his 4 medicines are being weened down so we are almost at 2 medications a day. I can’t wait to see where my little warrior goes from here!!