A Remarkable Surgery Gives Hope for Babies with Spina Bifida

By Rachel Whetstone from In The Cloud Copy

When Helisabed Romano was pregnant with her daughter, she got some bad news. The the developing baby had spina bifida, a defect of the spinal cord. Fortunately, there was hope. Lucile Packard Children’s Hospital Stanford had a team that could perform a surgery on the developing fetus while Romano was still pregnant. It was a 7-hour drive from her home, but she didn’t hesitate to set up a meeting at the hospital to find out if she was a candidate for the surgery.

Fetal Spina Bifida

When a developing fetus has spina bifida, the neural tube which contains the spinal cord doesn’t fully close. The opening ruptures into the amniotic cavity through the backbone. The nerves in the spinal cord are important for bodily functions and movement, as well as brain health. Increased fluid can also create pressure on the brain. The majority of babies born with this kind of pressure need a permanent ventriculoperitoneal (VP) shunt to drain fluid throughout their lives.

The amniotic fluid can also destroy spinal nerves, which can make it impossible for the child to eventually walk.

A Complex Surgery

While fetal surgery carries a number of risks, performing the surgery as the fetus is developing can provide a better post-natal result for the baby. There are strict guidelines about who can be eligible for the surgery, since it is risky for both mother and baby.

During the surgery, the uterus is opened and drained of amniotic fluid. The fetus is positioned so a surgeon can close the spinal cord defect. The amniotic fluid is then replaced, and the uterus is stitched to create a watertight seal, before the mother’s abdomen is finally stitched shut.

Helisabed was 22 weeks pregnant when she met with her surgical team. More than 30 nurses, physicians, and technicians worked together to ensure the safety of mother and baby during the surgery.

A Long Recovery

The surgery was successful, but the struggle wasn’t over. Helisabed spent another week’s stay at the hospital, along with another 10 weeks at the Ronald McDonald House nearby. She was advised not to do any heavy lifting to give her the best chance to bring the pregnancy as close as possible to full term.

Medication kept Helisabed from going into preterm labor. She got to the third trimester when her daughter, Iliana, was born via c-section. Iliana’s surgical site had healed well, and she had normal movement. Although Iliana required some support breathing, she left the hospital less than a month later.

Great Rewards

Doctors were impressed with Iliana’s leg strength and mobility as a newborn. She didn’t need a shunt in her brain, and her motor skills and brain development are on track at 6 months old. Helisabed still has video calls with the doctors at Packard Children’s Hospital for their expert advice and analysis.

The hospital is also involved in a multi-site study led by Texas Children’s Hospital to test new developments in fetal surgery for spina bifida. Success stories like Iliana’s bring a lot of hope for future research.


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