Braxton's CDH Story

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At 30 weeks we were transferred to a specialist for having a low lying placenta. It was at that ultrasound we were told our baby had no chance at survival.  We learned he had CDH and I remember asking “Is this where the intestines are outside of the body?” and the high risk doctor replied “No, it’s far worse.” The following day we went back for an amniocentesis and we were told Braxton had no visible lungs. A week later we found out he also had a sex chromosome defect called Klinefelters. We went to a large children’s hospital near our home grasping for any chance at hope. We met another high risk doctor who told us if we chose to fight then Braxton would most likely die on Ecmo because his stomach, spleen, & intestines were in his chest. We didn’t give up!

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We found Dr. Kays and knew we needed to relocate to St. Petersburg to be under his care.  We left Oklahoma and our other three children at 35 weeks.  We were so sad to miss Christmas with our kids, but knew it was where we needed to be.   On 1-18-18 Braxton arrived and wow did we fully understand the importance of being with Dr. Kays. Braxton crashed on day 2 and went on ECMO.  He had his CDH repair on day 3 and after 7 days of Ecmo he was off.  He quickly learned how to pull on his tubes once sedation was weaned & boy was that fun!  We had to put mitts on him to keep him from yanking out his tubes.  He was a fighter and even if it wa adjust most, it was fun to be able to dress him in someway!  Everyday I picked out his mittens and a hat and waited anxiously for the day I could put other clothes on him. 

Braxton was weaned off his ventilator after 23 days and the first outfit he wore was one that I bought at 15 weeks, before I know he was sick. Holding him for the first time was like a dream.  My husband told me I had to stop crying on him, but I couldn’t. We worked through a lot and battled a pretty bad infection, but after 54 days we were ready to head home. Braxton quickly realized the house wasn’t the quiet hospital he was use it.  He has 3 big siblings! He’s now a growing thriving 6 month old and we couldn’t be happier

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