New England’s first in-utero spina bifida surgery performed at Hasbro Children’s Hospital

Hasbro Children’s Hospital and Women & Infants Hospital, through their joint Fetal Treatment Program of New England, have performed the first open fetal surgery of its kind in the Northeast – microscopic repair of a baby’s spinal cord before birth.

Image/CDC

A 15-member multidisciplinary team, including nine physicians and two teams of nurses and scrub technologists, came together at Hasbro Children’s in May to perform the delicate two-hour surgery on the fetus, then at 25 weeks of gestation, and mother Emily Hess, of Attleboro, MA. It’s critical the intervention be done by 26 weeks of gestation for the safety of mother and baby, with the goal of the mother carrying as close to term as possible. Emily’s son, Selwyn, who had a severe defect on the lower level of his spine, was successfully delivered via C-section in late July at Women & Infants Hospital, just two days before a scheduled C-section.

“It was a huge success. It was as if the team had been doing this for years, and it’s heartwarming to see how well Selwyn is doing now. He’s growing like an otherwise normal child, and that certainly bodes well for his future,” said Francois Luks, M.D., Ph.D., pediatric surgeon-in-chief and division chief of pediatric surgery at Hasbro Children’s.

Traditionally done after a baby is born, in-utero surgery for spina bifida requires specific criteria be met such as early diagnosis of the defect and health of the mother. Significantly more delicate than surgery after delivery, the in-utero surgery requires opening the uterus to allow access to the fetus. Once the fetus’ back is exposed, pediatric neurosurgeons repair the defect, closing it in layers and covering it with skin and grafts so that leakage of spinal fluid is eliminated and the spinal cord is no longer exposed. The fetus is then repositioned within the uterus and the uterus is closed.

A 3-D model of the fetus was printed at Hasbro Children’s a couple of weeks prior to surgery to illustrate the patient’s spinal cord and defect, and the surgical team rehearsed in the Hasbro Children’s operating room in advance.

“With this incredible team with amazing talent and expertise in so many different areas, we are now able to perform work that used to have to be done after the baby was born. The earlier you can modify things, the better chance you have of effecting a really good outcome,” said Stephen Carr, M.D., director of the Prenatal Diagnosis Center at Women & Infants and co-director of the Fetal Treatment Program of New England.

With cases ranging from mild to extreme, spina bifida is a defect of the spine. In some babies a small portion of the spine is exposed and one or more vertebrae are open in the back. The skin is open and the spinal cord is exposed. The resulting nerve damage can impact leg motion and bladder and bowel control. Hydrocephalus, or water on the brain, can also affect brain function.

“When we learned that Selwyn had spina bifida, it was a blow, and very emotional, but he is doing very well. He’s meeting most of his developmental milestones and kicking his legs all the way down to his toes,” said mother Emily Hess.