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Grayson’s story: Our son’s remarkable progress seven years after spina bifida surgery

Photo courtesy of Althea Canezaro

Seven years ago when Althea Canezaro found out she was pregnant with her second child, she and her husband, Bryan, were thrilled to be parents again. But, at 21 weeks pregnant, Althea’s routine ultrasound revealed something the couple didn’t expect – their son, Grayson, had spina bifida. Althea’s physicians in Baton Rouge immediately referred her to Texas Children’s Fetal Center® where the Canezaros met with Texas Children’s OB/GYN-in Chief Dr. Michael Belfort and pediatric neurosurgeon Dr. William Whitehead. On July 29, 2014, Althea and Grayson were the first patients at Texas Children’s to successfully undergo a minimally invasive two-port, fetoscopic procedure to close the opening in Grayson’s spine at 23 weeks.

“I remember that moment like it was yesterday,” Althea said. “It was a scary and emotional time for our family not knowing what to expect down the road. After discussing our options with our fetal team, we knew this surgery was an opportunity to give Grayson the best life he could have. So, going forward, it was kind of like the ball was in their park. The weight was taken off our shoulders. Today, when I look at our almost 7-year-old son Grayson – he’ll be celebrating his birthday on Sept. 21 – I see a thriving and happy young boy who clearly has beaten the odds. We’re so grateful to everyone at Texas Children’s.”

Althea says Grayson is an energetic, loving, independent and strong-willed soon-to-be first grader. He enjoys school, playing with his older brother, Blaine, and meeting new friends. When he started going to school, his teachers explained to the other children why Grayson sometimes uses a walker, wears braces and does things a little differently than other children his age. He is a quick learner and his teachers are impressed with his progress. In fact, when he was in kindergarten, he started reading in three weeks.

“His classmates absolutely adore him,” Althea said. “When I drop him off at school, I’ll hear kids say, ‘Hi Grayson,’ as they give him a high five. Now that he’s older, he’s asked me questions like, ‘Why do I have this scar on my back? Why do I have to wear these braces?’ We teach Grayson he has a different ability, and he accepts that. We never treat him as being handicapped. We treat him as a normal child because Grayson doesn’t want any special treatment. He prefers not to use his walking sticks or a wheelchair. He wants to do things on his own. Grayson always figures out a way to be independent as possible. He loves to fish, hunt and enjoys the great outdoors. Recently, we signed Grayson up for a junior fishing tournament that he loves. We also built a chair for him on the front deck so he can sit down and fish.”

Besides enjoying life as any kid should, Grayson is hitting all of his developmental milestones. He has full movement of his legs and walks with and without the assistance of a walker. He continues to have virtual follow-up appointments with his doctors at Texas Children’s. Three years ago, Grayson had surgery to correct a tethered spinal cord where surrounding tissues become attached to his spinal cord making it difficult for the spinal cord to move freely. As a result, his spinal cord became stretched which, if left untreated, could lead to nerve damage. Although Grayson has had a few follow-up surgeries, which is expected for spina bifida patients, Grayson is doing well. His parents credit his great outcome to the fetal intervention surgery at Texas Children’s and the physical therapy he continues to receive closer to home.

“Our family is so grateful to Dr. Belfort and Dr. Whitehead for making it possible for Grayson to reach his milestones,” Althea said. “When his doctors told me they had practiced this fetoscopic surgical technique on sheep and then on a doll wrapped in chicken fat before creating their own experimental prototype, I was scared to death. But, it was Dr. Belfort and Dr. Whitehead who gave me the comfort in knowing this was an experimental procedure that would give my son a chance of a “normal” life. They alone gave us the comfort in knowing we were going to be okay. It’s been seven years since the fetoscopic procedure, and we are doing great. Every day, Grayson amazes me with his progress. The unknowns we had early on in Grayson’s spina bifida journey, are no more. The worst is far behind him.”   
Texas Children’s Fetal Center is among the nation's leaders in providing high-risk maternal care and the diagnosis and treatment of abnormalities in unborn and newborn infants. Click here for more information about our Fetal Center and the two-port fetoscopic spina bifida surgery pioneered at Texas Children’s.

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Althea Canezaro