Fetal Surgery for Spina Bifida: Will’s Story

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When Kathleen and Eric learned the baby they were expecting had spina bifida, the Boston-based couple was told all the things their son wouldn’t be able to do because of the condition. They traveled to Children’s Hospital of Philadelphia (CHOP) for fetal surgery, which offered hope for a better outcome. Six years later, Will walks, runs and jumps, goes to the same school as his friends, and continues to amaze his parents with all he can do.

Spina bifida fetal surgery patient Will, smiling After trying for 10 years to have a baby, Kathleen and Eric were ecstatic when they finally learned they were pregnant. Then, at the 18-week ultrasound, the couple learned their baby had myelomeningocele (MMC), a severe form of spina bifida. Spina bifida is a birth defect in which an area of the spinal column doesn’t close properly, leaving a section of the spinal cord and spinal nerves exposed.

“It was heart wrenching,” says Kathleen.

The obstetrician who made the initial diagnosis referred the couple to a maternal-fetal medicine (MFM) specialist. In between the appointments, Kathleen and Eric researched MMC online. What they read was troubling, but they tried to keep an open mind and take it day by day.

The MFM ordered a fetal MRI which confirmed the diagnosis. The fetal MRI also revealed that leakage of cerebrospinal fluid had caused the brainstem to move down into the spinal canal, a condition called hindbrain herniation. This can cause severe ventriculomegaly (enlargement of the fluid spaces within the brain), which can injure the developing brain.

The MFM went through the list of issues the baby could have after birth and presented the couple with their options: They could end the pregnancy; they could continue the pregnancy and have the opening surgically closed after birth; or they could go to Children’s Hospital of Philadelphia (CHOP) — home to the Center for Fetal Diagnosis and Treatment (CFDT) and surgeons who pioneered a technique to close the opening in the spine before birth — and see if they qualified for fetal surgery.

Given the location of the opening and the presence of hindbrain herniation, the MFM thought there was a good chance the family would qualify for the surgery, so they decided to go for it.

Fetal surgery to repair spina bifida

A week later, the couple was in Philadelphia. From the moment they met the CFDT team, they felt as though they had been working with them from the very beginning.

“They were very personable and very straightforward, which we liked,” says Kathleen.

After a detailed evaluation, they learned they were candidates for fetal surgery.

“We had already pretty much decided that if we were candidates we were going to go ahead with fetal surgery,” says Kathleen. “That would be our best option and give our son the best chance possible.”

At 21½ weeks, a team of surgeons opened Kathleen’s uterus, closed the opening in the baby’s back, and closed the uterus. The surgery and recovery after went well.

The couple stayed at the Ronald McDonald House in Camden, NJ, for the remainder of the pregnancy. It was hard being away from their family and friends in Massachusetts, but fortunately there were other families staying at the House who could relate to being far from home. 

“We developed a really good family at Ronald,” Kathleen says. “There are 20 rooms and 10 of us had fetal surgery for spina bifida. To this day we have a tight-knit relationship with the other families. It was nice to have so many people who knew what you were going through.”

Unexpected delivery

A c-section was planned for 37 weeks, but their baby boy had other plans. At 33 weeks and six days, Kathleen awoke feeling unwell. When another fetal surgery mom at the Ronald McDonald House asked if someone could give her a ride to CHOP, Kathleen and Eric volunteered, hoping that perhaps the clinical team could give Kathleen a quick check, too.

One of Kathleen’s MFM specialists at the Center for Fetal Diagnosis and Treatment, Nahla Khalek, MD, took one look at her and said, “You don’t feel well, do you?” It turned out Kathleen was in labor.

She was admitted to the Garbose Family Special Delivery Unit, and the medical team mobilized for immediate delivery. Less than 30 minutes later, Will was born.

Will was stabilized and whisked away to the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU). He had a feeding issue and needed a nasogastric (NG) tube for three days and had calcaneovalgus, a condition that caused his left foot and ankle to bend up and touch his shin. With stretching, children typically outgrow the condition over time.

After 14 days in the N/IICU, Will was discharged. The family stayed in Philadelphia an extra day to attend the CFDT’s Annual Fetal Family Reunion. There, they had a chance to thank the team that cared for them and meet other families who have gone through a similar experience.

Doing everything he dreams

Will, now in first grade, eating lunch Will is now in first grade and doing really well.

“He never sits down,” says Kathleen. “He loves to play with trucks and be with his friends and just be a kid. He’s amazing, he really is.”

Will receives special education for math and reading, but does everything else in the same class as his peers. Fetal surgery resolved his hindbrain herniation, so he hasn’t needed a shunt. Thanks to physical therapy, seven months after birth, the condition in his left foot was resolved. He gets physical therapy through school and goes to a spina bifida clinic in Boston for follow-up for neurogenic bladder and some mobility issues. He wears ankle foot orthotics, but he not only walks independently, he can climb, run, ride a bike, ice skate and play soccer.

“He does things that doctors told us he would never do,” says Kathleen. “And we don’t limit him. If he wants to try it, we let him try it. We owe all that to CHOP and the amazing doctors there.”

Screenshot of CFDT tour video

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