For the first time in Canada, doctors have successfully performed in-utero surgery on a fetus with spina bifida, a birth defect that can lead to lifelong disability.
Romeila Son was 25 weeks pregnant when a team of doctors from Mount Sinai Hospital and The Hospital for Sick Children in Toronto performed the surgery on her fetus, diagnosed with a form of spina bifida called myelomeningocele.
Myelomeningocele occurs when the spinal column fails to close early in fetal development, damaging the fetus’s spinal cord and nervous system. It affects approximately 120 to 150 babies in Canada each year.
The delicate procedure was performed at Mount Sinai Hospital in early June and it involved a team of surgeons, anesthesiologists, neonatologists, fetal medicine specialists, cardiologists and nurses.
Son was put under general anesthesia and her fetus was temporarily sedated and paralyzed with a fine needle. The surgeons made careful incisions in Son’s abdomen, avoiding the placenta and positioning the fetus so that the spinal defect could be repaired.
Several weeks after the surgery, baby Eiko was delivered via C-section at 36 weeks of gestation on Aug. 19. She is the fifth child in the family.
Since her birth, Eiko has needed no further medical intervention for spina bifida. Mount Sinai Hospital said it’s the first case in Canada where the mother didn’t have to travel to the United States for the specialized surgery.
At a news conference in Toronto on Tuesday, Romeila Son expressed her family’s gratitude to the doctors and the entire medical team that assisted with the surgery.
She said Eiko has surpassed all of her expectations after being released from the neonatal intensive care unit.
“Right now, her brain is stable, her legs are moving and kicking…She’s been home for two months and she’s doing amazing,” Son said.
“All of our prayers were answered. She is our little miracle," she said.
“I am extremely proud of the collaboration between Mount Sinai Hospital and SickKids – which has resulted in a terrific outcome for this baby girl,” Dr. Greg Ryan, head of the fetal medicine program at Mount Sinai Hospital, said in a news release.
“Having this kind of clinical capacity here in Ontario will really change the range of options available to parents who have been given a diagnosis of spina bifida during pregnancy,” he added.
However, Dr. Ryan cautioned that in-utero surgery is not appropriate for all fetuses with spina bifida and that the procedure does carry risks, including premature labour.
Dr. James Drake, head of neurosurgery division at SickKids Hospital, said he hopes that the in-utero surgery will help improve outcomes for babies with spina bifida, “and reduce the degree of medical challenges these children will face.”
Babies born with spina bifida typically have some degree of paralysis in their lower limbs. As they grow, many of these children will require leg braces, crutches or wheelchairs.
According to Mount Sinai, more than 80 per cent of children with spina bifida will require a permanent shunt to be inserted to relieve pressure on the brain, and that can lead to neurological problems.
Between 15 and 30 per cent of children with spina bifida do not survive into adulthood and fewer than 50 per cent live independently as adults.
A landmark study published by Vanderbilt University, Children’s Hospital of Philadelphia and the University of California in 2011 found that spina bifida surgery performed in the womb greatly improves the chances that the child will one day be able to walk independently. Babies who underwent the in-utero procedure also had fewer brain malformations and their need for brain shunts was reduced by half, the study found.
But the study also found that the babies who had the surgery were much more likely to be born premature.
The Society of Obstetrics and Gynaecologists of Canada (SOGC) recommends that any pregnant woman whose fetus has spina bifida be counselled about the in-utero procedure as an option.
The SOGC says that maintaining proper levels of vitamins and minerals, including folic acid, during pregnancy can lower the risk of birth defects such as spina bifida.