Mom Braves New Territory to Give Daughter with Spina Bifida Her Best Shot

Helisabed Romano had never left her hometown of Lake Forest, California. She’d never ventured to Los Angeles or even explored nearby Laguna Beach. Yet when she learned that the baby she was carrying had spina bifida, and that Lucile Packard Children’s Hospital Stanford could perform a vital in utero surgery to possibly save the baby from serious limitations later in life, she didn’t hesitate.

“I was scared, but in the end, it was all about my baby,” says Helisabed. “Whatever she needed, I would do it.”

That’s why in February 2019 she got in a car with her sister and drove nearly seven hours to Packard Children’s. There, she met with a multidisciplinary team of experts from the Fetal and Pregnancy Health program to see if she met strict guidelines to become a candidate for fetal surgery. This remarkable surgery demands exposing the uterus after opening the mother’s abdomen, draining the amniotic fluid and positioning the fetus so that its tiny spine faces the surgeon, closing the baby’s spinal cord defect, replacing the amniotic fluid, performing a unique stitch pattern on the mother’s uterus to create a watertight seal, and finally stitching up her abdomen.

“I found out I was a candidate, and I had to decide quickly. I was 22 weeks along, and it had to be done within the next few weeks,” she adds.

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. Since the spinal cord is a superhighway of nerves and connective tissues between the brain and the body’s extremities, its integrity is vital for movement, bodily functions, and brain health. Performing the surgery in utero may help to preserve the baby’s brain and spine function, ultimately providing a better outcome for the baby.

“Babies with spina bifida face two significant problems: the first is hydrocephalus, or pressure in the head, which is caused by hindbrain herniation of the brain into the spinal cord, resulting in increased fluid in and around the brain,” says Dr. Yair Blumenfeld, a maternal-fetal medicine specialist, and the fetal therapy director of the Fetal and Pregnancy Health program who helped perform the operation. “When this happens, 80 to 90 percent of babies need a permanent ventriculoperitoneal (VP) shunt to drain fluid and relieve pressure on the brain. Undergoing the fetal surgery can cut the risk of needing a shunt in half. The second problem is ongoing destruction of the spinal nerves when they are exposed to the amniotic fluid. By closing the spina bifida in utero, we can protect the nerves while the fetus is still growing. This can lead to improved leg function and doubles the likelihood of a child walking.”

For Helisabed, having the surgery meant leaving her four children at home with family and staying near Packard Children’s alone in the Ronald McDonald House at Stanford for the remainder of her pregnancy. She knew it wasn’t a cure, but she wanted to give her baby the best shot at a good life.

“I was scared and nervous. It was a new experience for me. But the whole team of nurses and doctors—even the maintenance crew—made me feel at home,” Helisabed says.

While open fetal surgery is done at other 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. The health system is uniquely equipped to equally care for fetuses, babies, and mothers. 

“The risk to mothers cannot be overlooked and made secondary,” says Dr. Yasser El-Sayed, chief of maternal-fetal medicine and obstetrics. “At Stanford, we are physically connected by a hallway to an adult hospital, so we can care for very complicated health needs of mothers and babies. There is really no other place like Stanford that has this capacity.”

Prior to the surgery, Helisabed’s multidisciplinary team of doctors brainstormed the best approach. When the day came, a team of nearly 35 physicians, nurses, and technicians worked in unison to orchestrate a successful surgery.

“We had experts from multiple disciplines, including maternal-fetal medicine, neonatology, obstetric and pediatric anesthesiology, neurosurgery, general surgery, radiology, and more all involved in the initial consult with many of these same experts in the operating room,” says Dr. Susan Hintz, medical director of the Fetal and Pregnancy Health program. “We were prepared for every possible outcome. For example, if we had to deliver the baby urgently, we were ready with a neonatal resuscitation team.”

The surgery went off without a hitch. Helisabed spent one week in the hospital and then returned to the Ronald McDonald House for another 10 weeks until delivery.

“When we anticipate a baby will have a long hospitalization and when an expectant mother needs to stay near the hospital due to medical or surgical conditions, we support the family in every way we can, even making sure they have a place to stay,” Dr. Hintz adds.

Doctors advised Helisabed to walk but not lift anything heavy or be on her feet too long in order to get her as close to full term as possible. She followed instructions carefully, enjoying short walks around the Palo Alto neighborhood.

“If I had to go back to the Ronald McDonald House, I wouldn’t even mind. I felt so well taken care of, and it really helped financially,” Helisabed says.

Using medication to prevent immediate preterm labor and delivery after the operation, Helisabed made it safely to the third trimester and delivered her daughter, Iliana, via cesarean section. Doctors were pleased to see that Iliana’s surgical site was well healed and that she was moving normally. She needed some support breathing, as do most premature babies, but Iliana was able to leave the hospital in less than a month.

“I’ll never forget walking in the Neonatal Intensive Care Unit and seeing Iliana for the first time. I was looking around for her, and I saw a baby on all fours with her back up in the air. I thought, this can’t be her,” says Dr. Gerald Grant, Neurosurgery Division chief and the neurosurgeon who repaired the spina bifida in utero. “I couldn’t believe her leg strength and her mobility for a baby with spina bifida. It was really quite shocking.”

Dr. Grant was instrumental in building the fetal surgery team at Packard Children’s for spina bifida. But before the hospital started performing surgeries, he wanted to make sure that resources were in place to support children with spina bifida. From that vision, the Spina Bifida Clinic was born. It started out with just a few dozen children, and now it sees nearly 200. The clinic gives kids the best chance at walking and gaining bowel and bladder control. It also helps parents manage shunts, enhance nutrition and social skills, and cope.

“It’s in the follow-up care where the quality-of-life measures for these kids can really soar,” Dr. Grant says.

Stanford Children’s Health is currently taking fetal spina bifida surgery to the next level. Along with performing open fetal surgeries, Stanford is part of a multi-site study led by Texas Children’s Hospital testing whether a minimally invasive alternative that uses a small incision and tiny instruments can be used to repair the neural tube defect. 

Helisabed now receives care close to home for Iliana. She didn’t want to leave the Spina Bifida Clinic, but it wasn’t feasible to stay, as she lived several hours away. However, Dr. Grant still visits with her regularly about Iliana’s progress via telehealth.

“It’s really nice to see Dr. Grant. He gives me good energy and hope,” Helisabed says.

Hope. It’s what baby Iliana has brought to the world since the day she was born. It’s her middle name, which Helisabed chose shortly after delivery at Packard Children’s. Iliana’s traumatic entrance into the world brought Helisabed’s family closer together. She’s more connected to her parents, and her older children adore Iliana—especially her brothers, who vow to protect her forever.

“She gives us all hope. She is always smiling and rarely cries. Every time she wakes up, the first thing she does is smile and start giggling,” says Helisabed. “She never needed a shunt, and at six months, she’s already starting to flip over. She’s amazing.”

Dr. Grant agrees: “Iliana’s motor skills and brain development are outstanding. We don’t know about her bowel and bladder control yet, but she’s right on track, which is wonderful to see.”

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