FERRIDAY, La. (BRPROUD) — A smiling 6-year-old boy proudly stood alongside his 7-year-old brother as they weighed in their catch on the final day of a youth bass fishing tournament on Father’s Day weekend.
Running along the shady bank of north Louisiana’s Lake Concordia with his red fishing jersey on, Grayson Canezaro blended in with the rest of the children competing in the Jr. Southwest Bassmasters tournament.
But Grayson, who has spina bifida, is considered a pioneer by doctors at Texas Children’s Fetal Center®. He was the first baby in the world to successfully undergo a groundbreaking prenatal procedure to increase his chances of becoming a mobile child.
Spina bifida, a condition that roughly three in 10,000 babies are born with, makes a fetus’ spinal cord fail to properly close, exposing nerves and causing the spinal cord to leak fluid. When nerves are exposed to amniotic fluid for too long, babies risk having nerve damage so severe that they may never be able to walk independently.
After an ultrasound revealed that Grayson had the condition in 2014, doctors in Baton Rouge referred the Canezaros to Texas Children’s Hospital. Two weeks later when his mother, Ali Canezaro, was 23 weeks pregnant, they underwent the first-ever successful two-port, fetoscopic spina bifida procedure to close the opening in Grayson’s spine.
An in-utero procedure for spina bifida had already existed, but it is much more invasive than Grayson’s surgery. It requires doctors to create a large incision in the mother’s uterus to operate on the baby. This procedure can cause complications, leaving mothers with an increased risk of bleeding or having a ruptured uterus. Babies must be delivered around the 34-week mark, and mothers who have this surgery must have cesarean sections for all future pregnancies.
The procedure Grayson and Ali Canezaro underwent is less risky, since doctors operate on the fetus by entering the uterus laparoscopically. These pregnancies generally last 38 weeks to 39 weeks, reducing the need for c-sections, according to Dr. Michael Belfort, one of the doctors who operated on the Canezaros.
Grayson’s father, Bryan Canezaro, said the decision to have Grayson undergo the new surgery was a no-brainer.
“Everything was found before because of somebody taking a chance,” Bryan Canezaro said. “Was it scary? Yes, it was extremely scary. But it offered him a better chance at a better way of life.”
Ali and Bryan Canezaro said they had faith in the doctors at Texas Children’s Fetal Center, who assured them they were equipped for the surgery and that the procedure could give Grayson a better quality of life. And doctors didn’t stop there.
“Seven years later, they’ve still given us a thousand percent,” Ali Canezaro, who’s now pregnant with the couple’s third child, said. “Hands down, I’d do it all over again.”
Bryan Canezaro said parents facing a similar decision involving their children should listen to doctors, stay positive and keep an open mind.
“Doctors aren’t going to lie to you,” Bryan Canezaro said. “They’re going to tell the truth. Have faith it will work. It has worked because I’ve got living proof.”
Belfort commended the courage of the Canezaros to go through with the procedure.
“I said, ‘You’re the first person in the world to get this,’” Belfort said, recalling a conversation he had with Ali Canezaro before the surgery. “And she said, ‘Well, somebody has to be the first.’”
Just like the Canezaros had to trust doctors that the surgery would help Grayson, doctors had to put their faith in the three years spent preparing for the first two-port, fetoscopic spina bifida surgery.
Belfort and his colleague who helped him perform the surgery on the Canezaros, Dr. William Whitehead, spent hundreds of hours training in a simulator they built. They also performed animal surgeries with a collaborator in Spain to prepare for the procedure.
“Quite frankly, by the time we got to do it, we were more eager than apprehensive,” said Belfort, the OB/GYN-in-chief at the hospital and the chair of the Department of Obstetrics and Gynecology at Baylor College of Medicine.
Most laparoscopic surgeries involve creating three to four small holes in the body, and one doctor holds the camera while another holds the instruments. Belfort and Whitehead, a pediatric neurosurgeon at Texas Children’s and a professor of neurosurgery at Baylor College of Medicine, trained themselves to operate differently.
The surgery Grayson had involves opening the mother’s abdomen, gently lifting her uterus up and then placing two 4mm ports into the uterus. Doctors then remove most of the amniotic fluid and replace it with carbon dioxide gas, enabling them to operate in a clear environment. They then proceed with the surgery, operating through these two small holes made in the uterus. It’s very different than the traditional minimally invasive approach, since each doctor has control of one of the two ports and one of the two instruments being used, Belfort said.
“It’s very much a dance and a coordination and a team effort to get two people with two sets of different eyes and nervous systems working like one machine,” Belfort said.
On Tuesday, Belfort and Whitehead completed the operation they pioneered for the 100th time. Since first operating on Grayson in 2014, they have trained doctors at 18 centers around the world to do this surgery. Some of those centers are in the U.S., while others are in Israel, Mexico, Peru and Australia.
Once met with great opposition, the surgery has become the standard of care for many children like Grayson because of its effectiveness. Babies in at least a dozen countries across four continents have benefitted from the procedure, according to Belfort.
“While prenatal surgery, or the in-utero surgery, is not a magic bullet that fixes everything, it definitely halves the number of shunts and doubles the number of people that can walk independently, and that’s clearly a benefit to the baby,” Belfort said.
Only about 20% of children who don’t receive prenatal surgery are able to walk independently, while twice as many who undergo the surgery before birth can walk independently, Belfort said.
While Grayson has used a walker and a wheelchair in the past, his parents say he is hardheaded and is determined to be independent.
Bryan Canezaro said one of the best things parents can do for their children with spina bifida is to let them do things on their own. He said he used to pack Grayson everywhere and do everything for him, but he realized it was best for Grayson to be more independent.
“It took everything I had to sit there and watch him struggle,” Bryan Canezaro said. “But that’s what got him where he is now.”
Ali Canezaro said Grayson’s famous words are, “I got it.”
Grayson enjoys hunting and fishing because of the independence those outdoor activities offer him.
“Hunting and fishing is something he can do in his own time, his own pace and his own way,” Bryan Canezaro said.
When he’s fishing, Grayson likes to lean against something to feel more secure, like a boat seat or his father’s leg, but he gets around in a boat just fine, doing anything he wants to do. Bryan Canezaro even built Grayson a custom seat in the boat that allows him to sit in the front with him, though Grayson doesn’t need to depend on his dad or his brother when he’s fishing.
“If you tell him he can’t, he’s gonna do it,” Bryan Canezaro said.
Though Grayson has been exposed to the outdoors since he was an infant–making his first trip to the family’s hunting camp when he was only 6 months old–competitive fishing is new to him. Grayson and his brother, Blaine, have only fished a few tournaments with youth club Jr. Southwest Bassmasters, which operates out of Denham Springs. They’re looking forward to fishing in more club tournaments in the future.
At age 6, Grayson is among the youngest members of the club. The club is open to boys and girls ages 7 to 18, but since Grayson’s birthday is only a few months away, he was able to compete early with his brother.
Jim and Cindy Breaux, the couple that heads the club, said children of all abilities and backgrounds are welcome to come fish with them. They’ve seen dozens of children come out of their shells and make friends through the club. Some, who are grown now, even fish professionally.
Older members are always willing to lend a helping hand to younger members or members who face challenges, Cindy Breaux said.
The Breauxs encourage parents to let their children join fishing clubs regardless of any challenges they may face.
“Parents can’t know what their kids can do if they’re not given a chance,” Jim Breaux said.
One requirement to fish in the club is that members must keep their grades up. One of the Breauxs’ famous mottos is: “No grades, no fish.”
So far, Grayson, a soon-to-be first grader, has had no problem meeting that standard.
“I don’t think I’ve had a bad grade from him yet, and I don’t think he’s ever gotten a conduct mark,” Bryan Canezaro said. “He’s very, very smart–let’s just put it that way.”
The future looks bright for Grayson, the outdoorsy little boy who wears a beaming smile and has a can-do attitude, thanks to the successful surgery, his parents’ courage and his strong-willed personality.