Minneapolis Surgeons Tackle Spina Bifida In the Womb

MINNEAPOLIS, MN — Spina bifida, a condition that occurs in the womb and can lead to significant physical and neurological damage, traditionally is treated after birth with ongoing surgeries, drugs, and physical and behavioral surgery. In its most severe form, between 10 and 15 percent of children won’t live to age 4.

But what if doctors could partially remove the fetus from mom’s body at around 25 weeks, perform a surgery that greatly increases chances the child will walk without crutches and reverses other debilitating effects, and then tuck the fetus back in the womb to grow for several more weeks?

A team of Minneapolis surgeons and specialists have performed such surgeries half a dozen times at Midwest Fetal Care Center, a collaboration between Children’s Minnesota and Allina Health. Open fetal surgeries aren’t unheard of, but neither can parents find a hospital that performs them around every corner. Only a handful of hospitals and clinics — fewer than a dozen — in North America routinely perform the procedures.

Spina bifida, which occurs in the womb when the spinal column doesn’t form and close properly, is still a frightening diagnosis for parents. Researchers don’t know exactly what causes it, but it appears to stem from a combination of genetic and environmental factors.

Open fetal surgery doesn’t cure it, but it can improve outcomes by 50 percent, Dr. Joseph Lillegard, pediatric and fetal surgeon and director of research at the Midwest Fetal Care Center, said on the clinic’s website. Children who undergo the prenatal surgery are less likely to need shunts to drain excess fluid on the brain, or to suffer from hindbrain herniation, a build-up of pressure in the skull that interferes with the brain’s communication with the body.

Though the American College of Obstetricians and Gynecologists has called the surgery “heroic intervention,” there are objections. Some surround the ethical and spiritual issues of personhood; others are focused on surgical risks to both the fetus and the mother.

“This is a Pandora’s box,” Dr. Brad Feltis, the surgery director at the Midwest Fetal Care Center, admitted to the Minneapolis Star Tribune.

Those concerns and risks are tempered by the fact that some effects of the disease can often be reversed prenatal, but not once a baby is born.

How It Works

During open fetal surgery, the fetus is partially exposed from the womb while doctors operate, then placed back in the mother’s uterus. Usually, the surgery takes place between 23 to 26 weeks gestation, and ideally, mom will deliver a full-term baby by Caesarean section.

Once the baby is born, a team of specialists — a neonatologist, orthopedic surgeon, pediatric surgeon, neurosurgeon and urologist — conduct an assessment and a full-term baby can typically go home after five to seven days in the hospital, Lillegard said.

The Midwest Fetal Care Center estimates that between 60 and 100 pregnancies in the Upper Midwest area served by the clinic are complicated annually by spina bifida. Annually in the United States, spina bifida occurs in one in every 1,500 live births, according to the U.S. Centers for Disease and Control. In most cases, it is mild and there are no symptoms, and it may not be discovered until an x-ray is needed for some other condition.

Nicole Carlin and her husband were among the first to elect for the surgery at the Minneapolis clinic, whre they were referred after a 16-week ultrasound confirmed the spina bifida diagnosis. On Feb. 10, 2016, at 25-weeks gestation, the surgery was performed. Carlin carried the baby to term, Clara was born by C-section on April 25, and at not quite 9 months, is a happy and healthy baby, the clinic said.

Many of the major complications related to spina bifida were reduced or reversed, Clara doesn’t significant hydrocephalus (fluid on the brain) and she hasn’t needed a shunt. She moves her legs well with good sensation to her lower extremities, and it doesn’t appear she has bladder or related problems.

It’s still early, her care team said, but indications are that she won’t suffer some of the disease’s debilitating effects.

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