As expecting parents, Justin and I were devastated to learn that our unborn baby had spina bifida. Because timing was critical, we immediately drove from our home in Oklahoma to meet with a medical team in Texas, hoping for the possibility of in-utero repair. Unfortunately, after further testing, the doctors there discovered that our child’s specific condition — called kyphosis1 — was too complicated for surgery. It was heartbreaking! Without surgery, our baby would have a persistent Chiari malformation2, which can cause spinal fluid to build up and result in brain damage, seizures and blindness. 

Fortunately, we were led to Cleveland Clinic. Dr. Cass3 and Dr. Recinos4 reviewed test results from our previous hospital and agreed to perform the procedure. We weren’t even unpacked from our Texas trip, but we loaded up our three kids and hit the road again for the 14-hour drive to Cleveland. 

A few days after we arrived, the multispecialty team took over, performing a six-hour fetal surgery to repair the spina bifida. They accessed the baby’s back through just a 2-inch incision in my uterus.  

As a mom, the whole time, I just wanted the baby to be OK. I’m so grateful to everybody at Cleveland Clinic for making us feel like family and for giving us hope. 

 

Tyler James McCaw celebrated his second birthday in September. 

Infant boy wrapped in a blue baby's blanket

Photo: Courtesy of Kimmie McCaw

Notes

  1. An excessive curve of the spine.
  2. A structural defect in the skull that causes part of the brain to push into the spinal canal.
  3. Darrell Cass, MD, is Director of Fetal Surgery.
  4. Violette Recinos, MD, is a neurosurgeon.

Tyler James McCaw was still in the womb when he had surgery to repair spina bifida.