Spina Bifida Awareness Month: Alana Robertson shares her story of in-utero surgery

Spina Bifida occurs while a fetus is still inside the womb. It means that the baby’s protective bones around the spinal cord are not formed completely, leaving the spinal cord and the surrounding tissues unprotected.

Spina bifida affects approximately 120 to 150 babies in Canada each year. While this condition is not life-threatening, it can lead to children being born with significant disabilities.

Treatment of spina bifida is available both before and after birth. The timing and choice of procedure depends on a number of factors, including gestational age at diagnosis and severity of the condition. In-utero surgery involves closing the spinal cord to prevent further damage, and may reverse the swelling on the brain.

In Canada, prenatal surgery is performed exclusively at the Ontario Fetal Centre, a partnership between Mount Sinai Hospital and the Hospital for Sick Children.

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When Alana Robertson became pregnant, she hadn’t heard of in-utero surgeries, or imagined she might one day need one. But when she learned her unborn baby was showing signs of spina bifida, she was open to anything that might help him. She learned that the surgeons at the Ontario Fetal Centre are global leaders in maternal-fetal medicine, and found herself becoming one of the first people in Canada to undergo an in-utero surgery designed to treat spina bifida. To date, the Ontario Fetal Centre has performed over 30 surgeries to treat spina bifida.

“For Alana’s baby, the spinal cord was really exposed at the level of the skin,” said Dr. Tim Van Mieghem, a maternal-fetal specialist at Mount Sinai Hospital. “The problem with spina bifida is that when the spinal cord is exposed at the level of the skin, the nerve endings that come out of the spinal cord slowly get damaged by the amniotic fluid and by micro trauma.”

After a successful operation, Alana’s son, Deacon, was born via C-section. Now three years old, Deacon loves showing his mom how much he likes to move.

“He just started walking independently,” she said. “He had braces and a walker, but now he prefers to walk without them. The other day we came home and he said, ‘I want to play soccer.’ And we got a soccer ball and he was kicking the ball on his own two feet!”

Hear Alana discuss her in-utero surgery on Frontiers of Care, a podcast by Sinai Health Foundation here

For more information on referrals and spina bifida in-utero surgery, visit the Ontario Fetal Centre website.