A Trisomy 18 Angel

Braxton was my first boy after three girls! I was so excited to finally be a boy mom. At 13 weeks, my doctor sent me for the NIPT which came back high risk for Trisomy 18 and a week later an abnormal NT. Through my own research we chose not to do an amnio since it wouldn’t change our choice. We later found he had tetralogy of fallot and a club foot. Everything else looked great, yet we were still pushed to terminate. We started seeing specialists at Johns Hopkins in Baltimore being given the impression they would repair his heart regardless of his T18. On August 28th at 34 weeks I went into labor at home 2 hours from the hospital. My labor was just like with my youngest daughter. It progressed so quickly that I delivered him myself at home butt-first. That’s where he broke the first rule. He was alive.

He flew at 3 hours old to a level 4 NICU where he spent his whole life breaking rule after rule. Unfortunately, we were lied to and every time he met the heart surgeon's goal, they would make another and another and another. On December 16th, we met with the hospital who told us B was ready to transition home and that IF he made it to 6 months they would repair his heart. He was still in the “gray area” for survival but it’s ok his heart is strong, we’re confident.

At 2am on December 17th I received the call I didn’t want. He had gone into a TET spell they couldn’t pull him from. He was placed on ECMO (first T18 baby ever at Hopkins to receive ECMO) for 8 days and he suffered a stroke the 2nd day. He was successfully removed December 23rd and Christmas Day I held my baby for the first time in 8 days.

On December 29th, the surgeons told us they “MISSED THEIR WINDOW FOR REPAIR'' and couldn’t do anything more. He passed away in our arms on January 1st, 2021 at 11:56am. Braxton loved dinosaurs, bears and his momo (hedge hog). Blue and lime green were his colors and his smile could light up the room. He had the attitude of his momma. Anytime they said he wouldn’t do something, he would do it just to spite them. He was and always will be my greatest miracle.

Leave a Comment

Please note, comments need to be approved before they are published.