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Doctors treat spina bifida with groundbreaking in-utero surgery
Surgeons at Texas Children’s Fetal Center pioneered an in-utero procedure for spina bifida and recently performed their 100th surgery of its kind. We got to talk to the very first mom and child who underwent this procedure six years ago and helped pave the way for other families. WARNING: This does involve surgical video but we blurred a lot of it.
HOUSTON - WARNING: The above video involves surgical video, but we blurred a lot of it.
A milestone at Texas Children’s Fetal Center. The surgeons, who pioneered an in-utero procedure for spina bifida, recently performed their 100th surgery of its kind.
We got to talk to the very first mother and child who underwent this procedure seven years ago. They truly helped pave the way for other families.
On many days, you can find six-year-old Grayson out on the lake, fishing in a boat with his dad and big brother. He has found his calling in a sport that he can easily do with braces on his legs. Grayson is the first child in the world to undergo a novel procedure, while his mom was still pregnant with him.
Doctors wanted to repair his spinal cord that was developing improperly because of spina bifida.
"It was very scary when the doctor told us the ultrasound tech found that he had spina bifida, and we had no idea what that was," explains Grayson's mom, Althea.
Up until this point, only a risky procedure for moms was available that would wipe-out her chance of other pregnancies. However, a team of specialists at Texas Children's Hospital was on a mission to lower that risk.
Althea packed her bags in Louisiana and headed to Houston. She met up with one of the brilliant minds behind it, Dr. Michael Belfort, OB GYN-in-Chief at Texas Children’s Pavilion for Women and the Chairman of Obstetrics and Gynecology at Baylor College of Medicine.
"This wasn't something that just came up out of the blue one day and we said, well let's do this. We were fighting public opinion and certainly within the scientific community, there was a lot of distrust of the technique, so I think that moving forward with Althea, starting our program, we were able to slowly convince people that this is the right thing to do for mothers," states Dr. Belfort.
Althea says she didn't think twice about it! "There was hope and there was a way to give him a normal life and we just hit the ground running," smiles Althea.
"I'll never forget this: she said, 'Somebody has to be first and I'm okay to do that.' What a brave and courageous woman and brave family, when you're offered something that is clearly experimental to say somebody has to be first," reflects Dr. Belfort.
Althea says she's grateful because her journey has been one for the books! At the time, the procedure was considered investigational and was overseen by four safety groups. Dr. Belfort spent hundreds of hours in simulation preparing for it.
Instead of a large incision to the uterus, he made several small ones, with a camera leading the way. Grayson weighed only a pound and a half when he became the first to undergo it.
Texas Children's even shared video of tiny Grayson in the womb during the procedure.
"The goal was to incise around the exposed area of spine, and then to cover that with tissue and close up the leaking area of the spinal cord and the lower spine," describes Dr. Belfort.
That very procedure has given Grayson the gift of mobility. His life would have been drastically different without it.
"He might have been confined to a wheelchair with bowel and bladder issues, and significant other problems that could range from cognitive dysfunction to infected shunts and all sorts of things. So, I think his life could have been very, very different. We're just so happy to see this little boy, interacting with his family, and being able to do things like go fishing, and have a normal life," says Dr. Belfort.
Grayson is thriving academically, as he heads into first grade and has found his calling on the lake. He can name every fish and bait.
"Grayson knows there's something lacking physically, so where he can strive, he takes the bull by the horns and goes with it," laughs his mom.
His family can't even fathom what his future would've been like without the procedure, plus Grayson will get to cherish a new sibling on the way, because his mom is successfully carrying her third pregnancy and is due any day.
"God only knows where we would be today if we didn't have them," states Althea. Dr. Belfort feels the same about her and says he and many other families will be forever grateful she had faith to be the first.
FOX 26 wants to send a big shout-out to photographers Cody Duty and Allen Cramer plus Texas Children's Hospital for sharing their photos and video to help us better tell this story.
Spina bifida is the most common spinal defect in the U.S., affecting between 1,500-2,000 babies every year.
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