Life-Changing Surgery for Kids with Cerebral Palsy — Only In the U.S.
Ben Sheppard is eight years old. He loves baseball and he hates sitting still. Ben has left hemiplegic spastic cerebral palsy. At home, he plays catch at the bottom of the stairs, tossing the ball halfway up and catching it as it rolls back down. He pretends to run bases around the house. If he’s feeling shy with a new person, all they have to do is mention the Blue Jays and conversation flows.
“If he was a kid that liked to sit on the couch and watch TV or read a book it would be a lot easier, but he’s not,” says his mother Robyn Sheppard. As Ben grows the tightness in his muscles, called spasticity, gets worse.
“It’s pretty frustrating to him,” says Sheppard. “His leg is tight, it spasms. His arm is tight. He’d rather be doing things on his own but there are no other options.” Over the past year, Ben has lost a lot of mobility. Even walking short distances has become a challenge.
The ankle foot orthotics he wears stretch his feet and ankles into a position that they’re not supposed to be in, given his condition. But without the orthotics, Ben falls more.
As his muscle tightness increases, he needs help with simple tasks such as getting dressed or brushing his teeth, things his little sister can do by herself. His mother quit her job as an educational assistant at Holland Bloorview earlier this year after Ben had a seizure at school, and took what she describes as “the longest drive of her life” back home.
“It was a game changer for us,” she says. All this for a 70-pound, growing kid whose entire spirit screams ‘Get up and Go!’ but who increasingly needs help getting out of the family van, and up the stairs to his house. What parent wouldn’t move heaven and earth to help their kid?
What Robyn Sheppard and her husband Norman are trying to do is raise $100,000 for Selective Dorsal Rhizotomy (SDR), a procedure available in the United States and proven to eliminate spasticity in kids with CP. “With the surgery, he’ll be able to do all that stuff himself,” says Sheppard. “It will be so freeing for him.”
The Internet is a notoriously unreliable place for health information. But in the before-and-after videos that have been posted by parents of SDR patients, children go from walking with difficulty on their tiptoes to walking flat-footed, in video after video after video.
To the average person’s eye, the results look miraculous. So why doesn’t every kid eligible for SDR get this procedure? Current treatment for cerebral palsy in Ontario includes Botox injections into the spastic muscles, and orthopaedic surgery. But the Sheppards would like Selective Dorsal Rhizotomy (SDR) surgery for Ben at St. Louis Children’s Hospital, to be performed by paediatric neurosurgeon Dr. Tae Sung Park, widely recognized as an SDR expert.
Park has developed a minimally invasive technique he’s used on more than 2800 patients over the course of 27 years. His results are proven, as you can read for yourself in this study (available from the US National Library of Medicine/National Institutes of Health). Patients from all over the world have made the trek to St. Louis with their kids, and Dr. Park returns the favour by making an appearance at annual ‘SDR parties’ abroad. He responds to families who post comments on on his hospital’s SDR support Facebook page, where parents post videos of their children’s improved walking skills.
This is what led Brampton mother Stephanie Visentin to successfully fundraise to send her son Aidan to undergo SDR surgery in St. Louis three months ago. Aidan is likely Dr. Park’s first patient from Ontario. “According to Erinoak [Kids Centre for Treatment and Development] — and I got it in writing — Aidan has a normal range of motion now,” says Visentin. “Before it was minus 25. SDR has completely eliminated his spasticity.”
Prior to the surgery, Aidan had been discharged from ErinoakKids after not making progress following a year of treatment. Visentin says they instructed her to work on wheelchair transfers with Aidan because he would never be able to walk independently. But three days after the procedure, Aidan was walking. When Aidan’s pediatrician saw him after SDR surgery, “she was in tears,” says Visentin. “She was in shock the spasticity was gone.” Despite her reaction, Visentin says that her paediatrician is reluctant to advocate for SDR access in Ontario. “She wouldn’t … even go there about doing anything politically.”
In fact, SDR was performed at The Hospital for Sick Children in Toronto during the 1990s, but the hospital ended the procedure after a randomized trial concluded there was minimal benefit to the operation. The study found that patients needed further orthopaedic surgery later on in their teens.
Dr. John Wedge assisted with the selection of SDR patients at Sick Kids at the time, but no longer supports the procedure. He says he believes in parents’ choice to have SDR surgery for their child, but doesn’t think the surgery should be performed and funded on “the public purse.”
“(SDR) permanently damages the dorsal nerve roots, and there’s a price to be paid down the years in terms of weakness,” says Wedge. “The longer term weakness and spinal deformity just don’t make the procedure justified.” He points to the current treatment for CP in Ontario, including Botox injections into the muscles and orthopaedic surgery as better, more reliable options. (Incidentally, Botox injections are not covered by OHIP and can cost parents up to $1000 per treatment.)
“The surgery they want to do in Ontario is horrible,” says Robyn Sheppard. “They want to break Ben’s femur and rotate his leg. They want to rotate his hip and surgically cut and stretch out muscles and tendons in his leg. After that, he’ll be an inpatient at Bloorview for three months. For a kid who can’t sit still.”
SDR is performed in Montreal by Dr. Jean-Pierre Farmer and in B.C. by Dr. Paul Steinbok, in a version of the procedure where surgeons remove five or six segments of the spine. In St. Louis, SDR is followed by a tendon lengthening procedure, typically a few weeks after the initial surgery.
“Our SDR procedure, we believe, is much less invasive because we don’t have to remove the bone — we just remove the bone from one segment,” says Dr. Park. “The surgery we do is much less invasive. And also, we offer surgery earlier.” Park insists SDR is the only proven technique which can eliminate spasticity in patients with CP.
“The medical evidence for the efficacy of this surgery is more robust than any other treatment we offer,” Park says. “There is no long term evidence for Botox, the baclofen pump, orthopaedic surgery or any treatment we do for CP patients.” After thoroughly researching SDR, it’s hard to understand why kids in Ontario are going without.
“Why some people have not been interested in this? It’s just a personal choice,” Dr. Park says. “But it is not based on the medical evidence.” Dr. Park selectively trains neurosurgeons in his technique, and doctors in the U.K., Hungary, Germany and South Korea now use his method during SDR surgery.
Visentin, who is helping the Sheppards raise money for Ben’s SDR, says she’s been talking to anyone who will listen about bringing the procedure to Ontario, and created a Facebook page to increase awareness about the SDR option. She feels it’s important that parents know there is an alternative treatment — albeit one that requires massive fundraising.
Her son Aidan had two bouts of pneumonia following Botox injections to treat his CP. She flat out asked Aidan’s doctors about alternative treatments, but didn’t get any answers. She learned about SDR after serendipitously meeting a family whose son also had CP, at the park; they had gone to the United States for a different procedure. Thus the Googling began. Visentin says they feel lucky that Aidan’s paediatrician was supportive of SDR. Other specialists have been much less positive about the procedure. “Every time a parent comes to discuss SDR, (the doctors) are like, ‘We don’t want to do, it it’s a horrible thing — but there’s Botox,’” she explains.
Imagine living with spasticity and then being free of it. That’s what’s happening to Aidan. He talks more now, and asks more questions. He also asks his mom when the other kids in his therapy group will go see Dr. Park so that will start talking more too, and he’ll be less bored during sessions. He grasps the connection between his increased energy and his surgery. Before the surgery, “everything was too much work and he was exhausted,” says Visentin.
For her part, Sheppard believes SDR is the best option for Ben, and she will do everything possible for her son to get the surgery he needs. “There is no question in my mind,” she says. “So we have to raise $100,000 (even if we have to) re-mortgage our house. We’re going to find a way to do it, because our child deserves nothing less.”
The Sheppards have raised almost $15,000 of the $100,000 needed for the surgery. On June 8, there will be a fundraising day in Brampton and a golf tournament is planned for July 6th. Donations can also be made on Ben’s Gofundme site.
One more exciting development: After learning about Ben’s story, the Toronto Blue Jays invited the Sheppards to hang out in the dugout at batting practise earlier this month. On June 28th, the team is hosting a baseball clinic in Mississauga with all proceeds going to Ben’s surgery.
But neither Sheppard or Visentin are forgetting about all the other people in Ontario who could also benefit from SDR. That those kids may miss out is something that upsets both women. “There are thousands of kids in Ontario — even adults — who could benefit from this surgery,” says Sheppard.