Chicago doctors performing special surgery to treat spina bifida in the womb

A new approach to treating spina bifida before a baby is born is happening right here in Chicago.

The surgery has been performed on three babies so far and the results are hopeful.

With a son already at home, Alyssa and Simon Anderson were excited to be expecting a little girl.

She was born on February 21 – two months after a life altering surgery.

"I almost faced it with denial for several days, just there's nothing wrong," Simon said.


The couple had a normal pregnancy until their 20-week ultrasound when their lives would be flipped upside down and they learned Millie had been diagnosed in utero with open spina bifida.

"You grieve for the baby or the life that you thought you were going to have," Alyssa said.

According to the CDC, less than 1,500 babies are born with spina bifida in the US every year.

It occurs very early in pregnancy when the brain and spinal cord are developing, but the bones – typically in the lower back – do not close properly.

"Which can have an impact on the legs, bowel bladder function. It can also have an impact on the developing brain," said Dr. Robin Bowman, Pediatric Neurosurgeon at Chicago Institute for Fetal Health.

After the shock wore off for the Andersons, they found a safety net on a social media page and the lifeline they were looking for at Chicago Institute for Fetal Health, where doctors suggested a less invasive and more innovative approach to surgery to treat the spina bifida called fetoscopic surgery.

"Three little ports in the mother’s uterus so that we can put in a camera with some working instruments and delicately close her back in utero," Dr. Bowman said.

The alternative? Surgeons would have to cut through the mother's uterus decreasing the chances of a vaginal birth.

It has to be performed before the baby is 26 weeks and the Andersons decided to be the third family to undergo this type of surgery in Chicago.

"It was, for us just an automatic if we qualified and if we had that option. We were going to do it," Alyssa said.

On December 21, they went to the hospital for the surgery. Dr. Bowman, who is the co-director of fetal neurosurgery, and Dr. Aimen Shaaban, who runs the program, operated on Millie.

"It will give her a chance to have better movement in legs and surprisingly for a number of children, a positive impact on brain development," Dr. Bowman said.

And it has for Millie who was born about six weeks early.

"She weighed four pounds, ten ounces. Tiny but very mighty," Alyssa said.

Her chiari malformation, a condition in which brain tissue extends into the spinal canal, present at birth, is gone – reversed at 30 weeks in utero.

And she has gained some weight, clocking in now at 4-months-old at 13 pounds.

It is still unclear what baby Millie’s future will look like, as there may be some bumps in the road. But she has two road warriors in her corner.

"We just want other families to know who have diagnoses or things that they think are really scary that your babies will be beautiful and resilient and wonderful," Alyssa said.