My living champion: Fetoscopic surgery to repair spina bifida

IMG_4514

Like any expectant parents, my husband and I were incredibly excited for our 20-week anatomy scan that would reveal whether we were having a boy or girl. This was baby number two for us, and we couldn’t wait to see if Glenn was having a brother or sister.

While the nurse started performing the ultrasound, it felt like she was taking longer than usual. She finally looked at my husband and me and informed us that they saw something different and she needed to call a doctor to explain the situation to us. All I was feeling at that moment were these butterflies in my stomach. My husband and I did not know what to expect—we just stared at each other and tried to be as calm as possible. The doctor finally came in and told us that our baby boy had something called spina bifida. I asked her to repeat herself numerous times because I had never heard of that and did not know what it was or what it meant. She then grabbed a pen and a paper and started to illustrate it out for us so we could better understand the condition affecting our unborn son.

Spina bifida is a birth defect where there is an incomplete closing of the backbone and membranes around the spinal cord. She said some big fancy words like myelomeningocele and chiari malformation. At the time, I felt like she was speaking another language. She then continued to explain to us how all of this could lead to hydrocephalus, paralysis and little or no bowel and bladder function. I just wanted her to stop speaking and I wanted to run away and just cry and scream.

It was very hard for us as we had no information and didn’t know exactly what it was and what it would be like. As soon as we got home, we started doing research.

The following day I had an appointment at Stanford Children’s Hospital because a group of doctors wanted to meet with us, provide us with a little more information and give us some options. There were so many options, but so little time to make our decision.

IMG_3476We decided to go to Texas Children’s Fetal Center to have fetoscopic surgery to repair our son’s spina bifida in-utero. This means that my little unborn baby was going to have surgery at 24 weeks gestation. This particular procedure had only been completed a handful of times and is still in the experimental stage. I was the 16th patient in the study, but I was confident from day one because once I got to meet the amazing Fetal Center team at the hospital; they made me feel like I was at home.

I didn’t know what I was getting myself into since I had no one in Texas and I was leaving behind my husband and 1 year old son. My husband had to work, so he was not able to stay with me in Houston the entire time. I was blessed to have my mom and family members stay with me throughout the five months I was in Texas.

 There were so many beautiful memories that I will never forget. This was definitely a life-changing experience for me. I was in and out of the hospital throughout those five months. If I wasn’t at Texas Children’s, I was staying at the Ronald McDonald House. I met some amazing families there and we became so close.

While at Texas Children’s I met two other moms who were also from California and that’s how we found out we had the same OB/GYN at Stanford and he had sent all three of us for this surgery.

Even to this day, we are all very close and we have play dates with Abdiel, Olivia and Victoria. These babies have been the greatest blessing in my life and I have learned so much. They are warriors.

Baby Abdiel is now 10 months old; he kicks and crawls and is surprising us with the strength he has. He had a couple of surgeries for his clubbed feet and an endoscopic third ventriculostomy (ETV) surgery.

 I believe if it weren’t for the amazing team of doctors at Texas Children’s, my son wouldn’t be who he is now. Texas Children’s changed my life forever. We now get to live our champion and watch him continue to grow day by day.

Posted in Fetal Center, Guest Post

Leave a Reply

Your email address will not be published. The * fields are required. Links are not allowed.