Toronto surgeons repair spina bifida in-utero

Toronto surgeons repair spina bifida in-utero
A team of surgeons from two Toronto hospitals made Canadian medical history this year performing in-utero surgery on a 25-week fetus to repair a form of spina bifida.

“These doctors changed my worst fears into faith-filled hope and they changed my daughter’s life for the better,” said Romeila Son, whose daughter Eiko Crisostomo was diagnosed with myelomeningocele, a form of spina bifida that affects about 120 to 150 babies in Canada every year, during her 20 week ultrasound.

Now, at almost four months old, Eiko’s brain is stable, her legs are moving and kicking, and she’s eating well and gaining weight, Son said. She hasn’t required any further interventions for spina bifida since the surgery.

Myelomeningocele occurs when a fetus’ spinal column fails to close during its early development, damaging its spinal cord and nervous system.

Though the severity of spina bifida varies, many children with the condition require mobility supports like leg braces, crutches or wheelchairs. Most also require a shunt to help relieve pressure on their brains.

Between 15 and 30 per cent of babies born with it don’t live to adulthood. Less than 50 per cent are able to live independently as adults.

Son was thrilled when she learned that she was having a baby girl — a little sister for her four boys — but her joy was short-lived, replaced with worry about the struggles her daughter may soon have to face when she was diagnosed with the condition.

“Finding out something was wrong with our little baby is probably every pregnant mother’s worst nightmare,” she said.

“Our doctor told us that this meant our beautiful baby girl would be expected to have brain damage, probably be in a wheelchair for life and diapers as well, that she’d probably be incontinent. We were devastated.”

When she got home Son turned to the internet and discovered an in-utero procedure that would change the outlook for her baby girl.

A groundbreaking trial lead by Vanderbilt University and published in the New England Journal of Medicine in 2011, found this procedure could reverse brain malformations by a third, and reduce the need for walking aids, wheelchairs, or brain shunts by 50 per cent.

Son thought she, like other Canadian mothers before her, would have to travel to the U.S. for the procedure, but a surgical collaboration between Mount Sinai and The Hospital for Sick Children, offered another option. She could be the first to undergo the surgery in Canada.

“I had zero doubt and 100 per cent confidence in these brilliant doctors and their abilities,” Son said.

A team of 24 specialized doctors and nurses — lead by Dr. Greg Ryan, the head of the fetal therapy program at Mount Sinai and Dr. James Drake, the head of the neurosurgical centre for the postnatal repair of spina bifida at SickKids — performed the surgery over two and a half hours on June 4, five weeks after Son first learned about her daughter’s spina bifida.

Son was put under general anesthesia. The major concern according to Dr. Ryan, was pre-term labour, it’s what he called the “Achilles heel,” so they did what they could to keep her comfortable and stable.

The surgeons then carefully moved the fetus into position and made incisions in the abdomen and uterus, careful to keep them as small as possible while still offering enough room to perform the next part of the procedure.

They gave the fetus a shot that included a pain killer, something to relax her and something to stabilize her heart.

The neurosurgical team from SickKids then placed an artificial patch to cover the exposed spinal cord and closed the surrounding skin over top.

After, the team from Mount Sinai replaced the lost amniotic fluid with salt water and closed the uterus with a watertight seal.

Son was admitted to the hospital for two weeks after the surgery. A couple months later she delivered her beautiful baby girl by caesarean section.

“All of our prayers were answered, she’s our little miracle,” Son said.

Dr. Paige Church, who leads the spina bifida clinic at Holland Bloorview Kids Rehabilitation Hospital and has the condition herself, said the surgery means she can now offer hope to the families expecting babies with spina bifida she counsels.

“Our families are very, very grateful,” she told the doctors.

While Mount Sinai’s Dr. Ryan said in a statement that the surgery won’t be appropriate for all fetuses with the condition and does involve some risk for mother and fetus, “it is extremely encouraging that, for some, it may preserve neuromotor function, reverse brain herniation and reduce their need for a brain shunt.”

“We regularly see children who have been affected by spina bifida at SickKids,” said Drake in a statement, adding that he hopes having the capacity to perform the surgery in Toronto will help reduce the medical challenges of those children.
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