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Just 22 weeks into her pregnancy, Helisabed found out that her developing baby had the most serious form of spina bifida, called myelomeningocele. With fetal spina bifida, the spinal cord, or neural tube, doesn’t fully close, and it herniates through the backbone and into the amniotic cavity. An intact spinal cord is vital for movement, bodily functions, and brain health.
The good news? The team at Lucile Packard Children’s Hospital Stanford could perform a cutting-edge in utero surgery to possibly save her baby from serious limitations later in life, proven successful in a national clinical trial called the Management of Myelomeningocele Study (MOMS). Helisabed underwent a rigorous process to qualify because not every mom and every fetus are candidates. When she was offered the surgery, she didn’t hesitate.
“She took on some risks for herself in order to have the chance to benefit her baby,” says neurosurgeon Kelly Mahaney, MD.
The other option was waiting until after the baby, named Iliana, was born and then having surgery to close her spinal cord. For Iliana, that likely would have meant living with a ventriculoperitoneal (VP) shunt to continuously drain fluid from her brain, among other complications.
“When the spinal cord is open, there is a risk for meningitis, which is a life-threatening condition. That’s why when we perform a traditional repair of the neural tube defect, we do it a day or two after a baby is born,” Dr. Mahaney says.
The fetal surgery has had remarkable results. It requires opening the mother’s abdomen, draining the amniotic fluid from the uterus, and positioning the fetus so that its tiny spine faces the neurosurgeons. The surgeons then close the spinal cord defect, replace the amniotic fluid, and place unique sutures to create a watertight seal for the uterus before closing the mother’s abdomen.
According to the National Institute of Neurological Disorders and Stroke, the substantial majority of babies born with myelomeningocele need a shunt, and most have leg weakness, experience changes in brain structure, and have bladder and bowel dysfunction. While Iliana needs leg braces to walk and a catheter to help drain her bladder, her brain and bowels work just fine. And she has never needed a shunt.
“She wears leg braces because her feet turn inward, but she runs in them. Her teachers have to ask her to slow down,” Helisabed says. “Plus she’s really smart. She loves school, and her vocabulary is way beyond that of most 3-year-olds.”
While fetal surgery is done at a few hospitals besides Packard Children’s, Stanford is one of the only places in the United States that offer side-by-side expert care for both babies and mothers.
“Iliana’s care journey is a good illustration of the comprehensive care that we provide moms and babies in our Fetal and Pregnancy Health Program,” says Susan Hintz, MD, medical director of the program. “Our care is all-encompassing, with several specialists who have deep expertise in treating moms and babies with simple to complex conditions—high-risk obstetricians, neonatologists, genetics, fetal imaging specialists, cardiologists, neurosurgeons, and heart surgeons—acting together like multiple spokes of a sturdy wheel to give every mom and baby the best possible outcome from early pregnancy to birth and beyond.”
“She’s one of the brightest, happiest kids you will ever meet. She shocks everyone with how well she is doing,” Helisabed says.
Iliana loves the playground. She dives right in and challenges herself to climb steps and go up and down the slide. “She finds a way to do it all. Even if she has to sit on her bottom to get up steps, she does it,” Helisabed says.
Dr. Blumenfeld couldn’t be more pleased with how well Iliana is doing. He looks forward to photos of Iliana as she grows for years to come. “It’s a privilege and an honor to know that we were able to dramatically change her life,” he says.
We hope you’ll join Iliana and her family at Summer Scamper on June 25. We’ll watch as she defies the odds to participate in her first kids’ fun run!