Hope Before Birth: Key West Family Celebrates First In-Utero Spina Bifida Repair at Holtz Children’s Hospital
By: Krysten Brenlla
Emily Shipman, 35, shares an inseparable bond with her 8-year-old daughter, Bella. Alongside her husband, the two do everything together – from managing their family’s small mom-and-pop shop in their hometown of Key West to traveling the world.
That bond grew even stronger when Bella got the news she had always hoped for: a baby sibling was on the way.
“My daughter and I left for Italy on May 28, 2024, and we were going to be gone the whole month of June,” Shipman said. “It was June 1 when I found out I was pregnant.”
Shipman and her family were excited for their newest addition. But, an 18-week ultrasound appointment in Key West showed a concerning diagnosis that changed everything.
“I just remember that the ultrasound tech kept looking at something, and she went to go get the doctor,” Shipman said. “The doctor came in, looked at the ultrasound, and told me that my baby had spina bifida. I didn’t even know what that meant.”
Spina bifida is a condition that happens when a baby’s spine doesn’t form properly during early pregnancy, leaving part of the spinal cord exposed to the outside. Normally, the spine closes around the spinal cord like a protective tube. But in spina bifida, the spine stays open and exposes the spinal cord, which can cause problems with the spinal cord, nerves, and the brain, leading to issues with movement, sensation, and even brain development.
“Within one minute, I was told that I wasn’t going to have a normal child, and that my baby would more than likely be wheelchair-bound,” Shipman said. “It was pretty much painted that I was going to have a vegetable baby.”
Despite the devastating diagnosis, Shipman never gave up hope. Her OB-GYN referred her to a maternal-fetal medicine specialist, who explained that an in-utero spina bifida repair might be possible.
That’s when Shipman met Rodrigo Ruano, MD, PhD, director of UHealth Jackson Fetal Care Center and division chief of UHealth Jackson Maternal-Fetal Medicine, and Heather McCrea, MD, PhD, director of pediatric neurosurgery at Holtz Children’s Hospital, and a UHealth – University of Miami Health System pediatric neurosurgeon.
Together, they lead the only maternal-fetal medicine/pediatric neurosurgery team to provide fetal spina bifida repair in South Florida. Dr. Ruano cares for the mother and exposes the baby in utero, and Dr. McCrea repairs baby’s spinal defect while they remain in the uterus.
“In Emily’s case, we also performed an MRI and found that the baby had hindbrain herniation, which is a condition where part of the brain is pushed down into the opening at the base of the skull,” Dr. McCrea said. “That pressure can block spinal fluid and affect brain function. After reviewing her case, Dr. Ruano and I determined that she was a strong candidate for fetal surgery.”
“We typically offer in-utero repair of spina bifida between 22 and 26 weeks of pregnancy,” Dr. Ruano added. “The mother is placed under general anesthesia, and through a small C-section-like incision, we open the uterus and carefully expose the baby’s back. A pediatric neurosurgeon, in this case Dr. McCrea, then closes the defect. This procedure can significantly improve the baby’s brain structure and reduce the risk of further nerve damage or fluid buildup in the brain.”
Shipman and her family decided to move forward with the procedure. On October 22, 2024, she became the first patient to undergo in-utero spina bifida repair at Holtz Children’s.
Just two months later, on December 31, 2024, Shipman and her family rang in the New Year with their newborn son, Luey. When he was born, his back was completely closed, and the hindbrain abnormality was fixed.
Luey received specialized care in the Newborn Intensive Care Unit (NICU) at Holtz Children’s Hospital, where a dedicated team of neonatologists, nurses, and specialists ensured he had the strongest start possible.
“It’s very unique that God gave me this opportunity to help those babies before they’re born,” Dr. Ruano said.
As Luey grows, he’s receiving care by Dr. McCrea and a multidisciplinary team in the Holtz Children’s Comprehensive Spina Bifida Clinic.
“We’re really excited to see who Luey becomes, and what he does,” Shipman said. “We’re also so excited to see the impact the fetal surgery had on him. I can’t thank the teams at Jackson Memorial and Holtz Children’s enough.”