Fetal Surgery for Spina Bifida: Scout’s Story

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Elizabeth Watkins likes to say her daughter, Scout, was born twice. The first time was at Children’s Hospital of Philadelphia (CHOP) when surgeons repaired a lesion in Scout’s spine while she was still in the womb. The second time was three months later when Scout was delivered by c-section at a Florida hospital.

“We say we get to see a miracle every day,” Elizabeth says of her baby daughter.

Spina bifida diagnosis

Scout Elizabeth was 18 weeks pregnant when a routine ultrasound showed the ventricles in her baby’s brain were dilated. A perinatologist near the Watkins’ home in the Orlando area diagnosed the baby with spina bifida, a birth defect in which the spinal column doesn’t form properly, leaving a section of spinal cord and nerves exposed through an opening in the back.

As Elizabeth and her husband, Tyron, absorbed the news, the perinatologist said the baby seemed to be a good candidate for fetal surgery based on the location of the spinal lesion and the early diagnosis. Fetal surgery for myelomeningocele (MMC), the most serious form of spina bifida, is performed between 19 and 25 weeks of gestation. He ordered an amniocentesis to rule out chromosome abnormalities, and the couple went home to do their research.

“Dr. Scott Adzick’s name and CHOP’s Center for Fetal Diagnosis & Treatment kept coming up,” says Elizabeth. N. Scott Adzick, MD, MMM, FACS, FAAP, is Surgeon-in-Chief of Children's Hospital of Philadelphia and the founder and Director of the Center for Fetal Diagnosis & Treatment. He is a pioneer in fetal surgery.

One study in particular gave the Watkins hope: The Management of Myelomeningocele Study (MOMS) co-led by CHOP showed better outcomes for babies who had fetal surgery for spina bifida than those who were operated on after they were born. Because spinal cord damage gets worse during gestation, correcting the defect in utero can prevent further injury.

When Elizabeth’s amniocentesis results showed no chromosome abnormalities, the couple called CHOP’s Center for Fetal Diagnosis & Treatment. Two weeks later, they were on a plane to Philadelphia for an intensive two-day evaluation.

Finding the “dream team”

During their pre-surgery consultation at CHOP, the Watkins met with what Elizabeth calls the “dream team,” of fetal surgeons, maternal-fetal medicine specialists, social workers, a psychologist and others.

Advanced imaging tests and a detailed evaluation confirmed that Elizabeth and their unborn child were candidates. The tests also showed that the baby had movement in her hips, knees, ankles and toes, giving them hope that fetal surgery would preserve lower limb function. After carefully considering their options, the couple decided to have the fetal surgery.

“My husband and I were both on the same page: Give this kid the best chance she can have,” Elizabeth says.

She and Tyron returned home to arrange for her parents to watch their two daughters, then were back in Philadelphia for the surgery. The baby was a day shy of 23 weeks' gestation when Elizabeth was wheeled into the operating room. Dr. Adzick led Elizabeth’s fetal surgery team, and he helped pediatric neurosurgeon Gregory Heuer, MD, PhD, repair the opening in the baby’s spine. From start to finish, the combined surgeries on mother and baby took just 67 minutes.

Elizabeth was released from the hospital four days later and stayed in Philadelphia for a month before being cleared to return to Florida for strict bedrest. In most cases, mothers who have fetal surgery deliver their babies at CHOP’s Garbose Family Special Delivery Unit (SDU), but the financial and emotional cost to the Watkins of having Elizabeth far from home was high. Her care team arranged to work closely with Winnie Palmer Hospital for Women & Babies, a specialized women and children’s hospital in Orlando, where Elizabeth would deliver her baby.

“At her own pace”

Scout Elizabeth was 36 weeks into her pregnancy when she went into labor. Scout arrived by c-section in February 2017, weighing 6 pounds 15 ounces. She scored 9.9 out of 10 on her Apgar test. And though she was brought to the neonatal intensive care unit as a precaution, Scout didn’t require any specialized medical care. A few days later, she went home with her family.

Now nearly 8 months old, Scout is sitting up on her own and can say several words. She is not as strong in her lower extremities as other babies her age, but a developmental therapist began working with Scout at 6 weeks old, and she’s hitting milestones “at her own pace,” her mother says.

When Scout was 4 ½ months old she had an endoscopic third ventriculostomy (ETV) surgery to treat hydrocephalus. Doctors will continue to monitor Scout for hydrocephalus because of the enlarged ventricles in her brain, and in a few months, she’ll have an MRI to evaluate her spinal cord. The family also keeps an eye on Scout’s bladder and bowel functions, which may still be affected by spina bifida even after fetal surgery.

“There are some extra things we have to look out for, but we’re so fortunate,” Elizabeth says. “She’s just like any other normal, happy baby. She’s not a kid who is suffering from spina bifida. She is a child who is totally living a full, happy life with spina bifida.”

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