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First in-utero spina bifida surgery performed in Canada

Click to play video 'Toronto baby receives Canada’s first in-utero spina bifida surgery' Toronto baby receives Canada’s first in-utero spina bifida surgery
WATCH ABOVE: Romeila Son was just 20 weeks into her pregnancy when her baby was diagnosed with spina bifida. As Allison Vuchnich reports, baby Eiko's success story is giving new hope to other Canadian families – Nov 14, 2017

Doctors at Toronto’s Mount Sinai Hospital and The Hospital for Sick Children performed the first ever in-utero spina bifida surgery in Canada on a fetus at 25 weeks gestation in June. The baby was born on Aug. 19 and has not required any further intervention.

The mother, Romeila Son, was the first in Canada who didn’t need to travel to the U.S. for this specialized surgery.

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“This is very exciting,” Dr. Greg Ryan, head of the fetal medicine program at Mount Sinai Hospital, said to Global News. “It really is a step forward for mothers who have been given a diagnosis of spina bifida because it’s an extra intervention that can decrease an awful lot of the problems that can occur for a select number of moms.”

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The baby had been diagnosed with myelomeningocele, a form of spina bifida that causes the spinal column to fail to close in early fetal development, which can lead to permanent damage of the spinal cord and nervous system. It is estimated that up to 150 babies in Canada are diagnosed with this condition every year.

“It’s important to say this isn’t something that every baby will be a candidate for, but for those who are, there are significant improvements,” Ryan said.

Spina bifida can lead to varying degrees of paralysis of the lower limbs, requiring mobility supports like leg braces, crutches or a wheelchair. More than 80 per cent of children with spina bifida require a shunt in their brain to relieve pressure, which remains in place their entire life, and in some cases can cause negative neurocognitive outcomes. Roughly 15 to 30 per cent of children with spina bifida do not survive into adulthood, and less than 50 per cent live independently as adults; one-third of adults require substantial daily support.

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“For the baby themselves, [this surgery] is a dramatic improvement in their expectations and what they can see during their lifetimes. There’s a much lower incidence of needing a shunt,” Dr. Jim Drake, chief of neurosurgery at the Hospital for Sick Children, said to Global News. “Their lower extremity function and their intelligence is improved with the operation, so for them, it opens up a whole new prospect.”
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In a groundbreaking study published in the New England Journal of Medicine in 2011, doctors from Vanderbilt University, the Children’s Hospital of Philadelphia and the University of California, San Francisco showed that babies who underwent the in-utero procedure were 50 per cent less likely to need brain shunts, walking aids or a wheelchair, and brain malformations were reversed by one-third.

For this procedure, Ryan and Drake worked with a team of 24 clinicians, including colleagues from Vanderbilt University who pioneered the procedure. It took two-and-a-half hours to perform and the baby, Eiko, was born via C-section at 36 weeks.

Son and her husband, Romeo Crisostomo, were initially devastated by their baby’s diagnosis but had faith that the in-utero procedure would be successful.

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“I knew that in-utero surgeries were possible because I’d seen some of the work that Dr. Ryan had done before, especially that he had operated on my best friend’s twin babies before in-utero,” Son said. “It was a great surprise that we were able to get it done [in Canada], which is so much better and easier to be close to home and my kids.”
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The couple, who also have four sons ranging in age from four to 16, are grateful that the surgery was successful, but they’re also pleased that their daughter’s case will open the door for more surgeries of this nature to be carried out in Canada.

“We’re so thankful that her surgery went well and that other families will be able to have the same surgery available to them,” Son said. “I think eventually, when she understands everything, I think she’s going to be awed at how great of a role her surgery played in helping save other babies too.”

—With files from Allison Vuchnich