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Spina bifida: Our fetal intervention story

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We were so excited to find out in October 2015 that we were expecting our second child. We had been trying for a couple of years and were beginning to think it wouldn’t happen. Everything was progressing wonderful and we found out that the following November we would have our first and only boy. We went in for our routine 20 week anatomy ultrasound and left thinking everything was perfect, like with our first.

I was waiting for that call to confirm what I was thinking. That call finally came, but I didn’t hear what I was expecting. I was told there could be something wrong with the pregnancy, and I would need to have another ultrasound with a high risk doctor. Nothing prepared us for what we were about to hear. We were told on Jan. 6, 2015, that our precious baby boy had spina bifida. I had heard of it, but didn’t really know what it was. As the doctor explained to me what it was and what that meant for my son, tears streamed down my face.

My heart was broken. I felt defeated and as if I had let my son down. What did I do to cause this to happen? After giving us a moment to process what we were told, the doctor came back in to the room and proceeded to tell us about this new surgery they are doing in Houston at Texas Children’s Hospital. They would do an intrauterine surgery to close the lesion on his back, rather than waiting until after he was born. We were immediately on board. He gave us the information and the next day I was on the phone getting everything in place for our evaluation. After many ultrasounds, an MRI and meetings with doctors, we learned we qualified for the surgery! The day before surgery we met with the whole care team who made sure we were on board and answered any questions we had. On Jan. 26, 2016, at 25 weeks gestation, we underwent fetal intervention surgery. Everything went perfectly! I was in recovery for about two weeks. We had a few scares during recovery, as they thought I might have ruptured, but everything turned out fine and a few days later I was discharged.

For the remaining months of my pregnancy, I stayed in Houston at the Ronald McDonald House with my mother. My husband and daughter, who was 3 at the time, would come down on the weekends. It was so hard being away from home and family, but completely worth it. April 19, 2016, at 37 weeks, our precious Andrew was born via C-section. He came out kicking his legs and wiggling his toes. He had control of his bowels and bladder and did not require a shunt. He spent 10 days in the NICU and was finally able to come home. He would have been discharged sooner, but he had a hiccup with not eating as much as the doctors would like.

A few days after being discharged, we made the long trip back home to Tulsa. Andrew is now 18 months old and is thriving! He’s mainly crawling, but pulls up to his feet on EVERYTHING and cruises back and forth. I’m confident he will be walking in no time! Andrew is still shunt-free and will most likely not need one. We travel back to Texas Children’s for all of Andrew’s checkups at the Spina Bifida clinic. We are so thankful for all the doctors and nurses who took care of both of us before, during and after Andrew was born. God has blessed our son and our family so much. We are so thankful for Him and for our answered prayers.

Post by:

Kimberly Norris, patient and mother of patient