10/26/2024
October 25th is World Spina Bifida & Hydrocephalus day. In January 2021 at 20 weeks my ultrasound showed a “lemon-shaped” skull and an issue imaging his spine. I got the call on a Thursday that there was “something wrong” with our baby’s brain but I wouldn’t see the high risk maternal fetal medicine doc until Monday. The anxiety and sadness that swept over me was debilitating. I could only think of the worst for the 72 hours between that call and MFM ultrasound.
After an ultrasound confirmed a spina bifida diagnosis, an amniocentesis confirmed Myelomeningocele, considered the most severe type of spina bifida where his spinal cord and nerves were fully exposed and developing outside his body at L4-S1.
The options felt grim, but fetal surgery in utero was the most appealing option for us. Unfortunately there were only a handful of states where open fetal surgery was offered. After sharing our story on social media, we were connected with an old college friend who happens to be married to , a high school friend of my brother’s, who we’re going through the exact same experience, except with a less invasive fetoscopic surgery using probes down in Texas.
God took it from there. From connecting with Kristi and Shaddye about their fetoscopic surgery journey to being able to move our entire family into the house in Sugarland that the Melu’s rented while they were there, the timing was all just so insane. They were discharged from the hospital the day we had surgery and we were discharged the day after they moved out of the Sugarland house. It was truly all so perfectly timed.
As we planned the logistics of moving to Texas for 3 months, I struggled with the idea of intervening in utero with such an experimental surgery (I believe we were surgery 93 for Dr Belfort and Dr Whitehead). I felt like we were playing God. I was scared that we would lose him…or both of us. I was just so overwhelmed with everything…oh, and the twins were 18 months old.
We had so much help, I can’t even properly thank everyone for all they did for us. The donations on gofundme, the meals in WA and TX, but most importantly our family. Cont 👇🏼