St. Louis hospital not only option for life-changing cerebral palsy treament

A Toronto father whose son had surgery to treat his cerebral palsy says the procedure is readily available here in Canada and parents should make sure which operation is right for their child before heading to the U.S to have it done at a much higher cost.

Demetrio Bruno's son Gianfranco had Selective Dorsal Rhizotomy (SDR) surgery at the Shriners Hospital-Canada in Montreal. The eight-year-old has spastic diplegia cerebral palsy, which causes muscle stiffness mainly in his legs.

Bruno said a year and a half after SDR surgery, his son no longer needs a walker or canes to get around and can climb stairs normally.

"He's walking independently now," Bruno told CBC Toronto.

"Two weeks ago we were in Ottawa at the Rideau Canal and he went skating for the first time."

Bruno said initially he was under the impression that there was only one place his son could have SDR surgery — the St. Louis Children's Hospital in Missouri.

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But he did some research and found out hospitals in Montreal, Vancouver, Seattle, Boston and St. Paul, Minn. also offer SDR procedures.  Bruno said he emailed Dr. Jean Pierre Farmer, the chief of neurosurgery at Shriners in Montreal, directly with his questions and received a response within a few hours.

After deciding to go there, Bruno said within six months of getting a referral from his son's developmental pediatrician, Gianfranco had an assessment and underwent surgery on Aug. 13, 2015.

Bruno said there was no need to get an Ontario neurosurgeon to assess his son, which has been a challenge for parents hoping to get their kids referred to St. Louis.

Farmer told CBC Toronto that he performs essentially the same surgery as Dr. Tae Sung Park at the St. Louis Children's Hospital in Missouri. Dr. Farmer said he has been performing SDR surgery for 26 years. It involves finding which nerves in the lower back are causing muscle tightness and cutting them.

According to the University of British Columbia, the SDR procedure was first performed by Dr. Paul Steinbok, the head of pediatric neurosurgery at B.C. Children's Hospital in February 1987,  

"Park in St. Louis does the procedure a little bit higher up through a smaller incision, but we have not had as many long term results since he modified this procedure," said Farmer. "It a little bit to do the operation faster."

But Katherine Ambos, whose three-year-old daughter Madison is scheduled to have SDR in Missouri in May said families opting to go to the U.S. have never claimed SDR surgery was not available in Canada.

"The surgery is called the same thing, but the technique the surgeons use are different," said Ambos, who said Park's technique, while less invasive, removes more of the nerves causing muscle stiffness. She also said the surgery is Dr. Park's specialty and he does thousands of the procedures, many more than Canadian pediatric neurosurgeons.

It's called the same thing, but the procedures are different.-  Katherine Ambos

But Ambos agrees that it's up to each family to decide what's best for their child.

"There are so many different types of cerebral palsy and so it depends on the type of mobility the child has. We researched it for over a year," she said, admitting the big factor in making a decision for many families is the cost.

For Madison, the surgery, accommodation, special equipment and rehab will cost the family about $140,000. A GoFundMe campaign has raised more than enough to cover that.

After CBC Toronto did a story on the difficulties Madison's family faced in getting OHIP to fund her surgery in St. Louis, Ambos received a letter from the Ministry of Health saying that OHIP will now cover the $30,000 US cost of the actual operation. The remainder will be donated to other families fundraising so their kids can go to Missouri for the surgery.

"I think there's a lot of families that would never be able to fundraise, or may choose to want to stay in Canada, We decided we would fundraise because in our mind that was the better choice," said Ambos.

But Bruno, whose son Gianfranco had SDR surgery in Montreal for about $3,400, said money was not the deciding factor. The SDR procedure is not available in Ontario, so parents can apply for OHIP Out of Province Services coverage. Bruno said he was reimbursed within six weeks.

"The cost [of going to the U.S.] was astronomical," said Bruno. "But if we really wanted to get it done [in St. Louis] both sets of my son's grandparents were willing to assist financially."

Bruno said he settled on going with Shriner's because of the long term follow up care. Gianfranco will go back to Montreal for a check-up every year until adulthood.

"Parents have to do their homework to decide which treatment is right," said Bruno. "No one knows your child better than you. You have options."