Preschooler Thriving Three Years After Fetal Surgery for Spina Bifida

Iliana smiling

When Yair Blumenfeld, MD, a maternal-fetal medicine specialist, receives a text message with a photo or video of Iliana, age 3, laughing, walking, and enjoying life, he shares it with his colleagues from the Fetal and Pregnancy Health Program who made it all possible. It makes everyone’s day. Ever since Iliana had a fetal surgery, she has been defying the odds that often accompany her serious form of spina bifida.

“I had the chance to give my baby a better opportunity in life, and I took it,” says Helisabed Romano.

It was a selfless act by Helisabed to leave home in Southern California, undergo the surgery at Lucile Packard Children’s Hospital Stanford, then stay near the hospital in the Ronald McDonald House at Stanford for months before and after delivery. Today, she is extremely glad that she did it.

“To me, Iliana is a normal child who is a little delayed, but without the surgery I think she would have had it a lot worse,” Helisabed says.

At just 22 weeks along, she 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.

Helisabed learned that Stanford Medicine Children’s Health 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). She 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 Kelly Mahaney, MD, interim chief of pediatric neurosurgery.

The other option was waiting until after 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.

Iliana running

“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.”

When Helisabed takes Iliana to her spina bifida clinic in Orange County, California, for physical therapy, she walks away feeling extremely grateful to the doctors at Stanford Children’s and proud of herself for undergoing the fetal surgery. 

“There are kids in wheelchairs and kids with shunts. I can’t imagine how those moms do it,” she says. “Iliana has had a great outcome.”

Iliana’s outcomes are in line with or better than the overall findings of the MOMS study, where approximately 40% of babies who received prenatal surgery needed a shunt, compared with approximately 80% of babies who received the spinal closure surgery after birth. The MOMS study was so successful that they closed it early, something that rarely ever happens.

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.”

Lifelong Care Through the Spina Bifida Clinic

Children with spina bifida often need lifelong care to help them meet milestones and maintain bodily functions. That’s why Iliana sees doctors in her hometown to keep her walking on track. She also receives some support at school. When Iliana was an infant, Helisabed brought her to the Stanford Children’s Spina Bifida Clinic, but it wasn’t feasible to stay, since she lives several hours away. But she understands the power of Iliana receiving medical support.

“She’s one of the brightest, happiest kids you will ever meet. She shocks everyone with how well she is doing,” Helisabed says.

The Spina Bifida Clinic supports children and parents with all of their needs. It gives kids their best chance at walking and gaining bowel and bladder control, and it helps parents navigate the health care system, manage shunts, enhance nutrition and social skills, and cope. The Spina Bifida Clinic care team includes the full gamut of specialists, including neurosurgeons, neonatologists, developmental and behavioral pediatricians, orthopedists, urologists, physical therapists, occupational therapists, dietitians, and social workers.

“For parents to be able to see all of their subspecialty providers in one location on the same day and address neurosurgical, orthopedic, urologic, developmental, and social concerns all in one visit is really critical for parents of children with such a complex medical condition,” Dr. Mahaney says. “For providers to be able to discuss a child’s case together in real time allows them to provide the highest level of care.”

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.

Iliana wearing dress

Learn more about our complex fetal and pregnancy care and Spina Bifida Clinic.

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