Baby Isaac is thriving after an East Coast first for a neural tube defect

Isaac Suardi doesn’t know it yet, but he’s already made history. Just born in July, he’s the first baby on the East Coast to undergo mini-laparotomy fetoscopic surgical repair of a neural tube defect (NTD) while still in his mother’s womb.

“Honestly, we didn’t think too much about that,” admits his father, Chris. “We knew the whole team was so experienced and we just wanted Isaac to be good.”

This type of minimally invasive procedure is performed through a small (less than 2 cm) incision in the pregnant parent’s abdomen, using a small camera called a fetoscope and tiny surgical instruments that can access the fetus through small entry holes made in the uterus. This means no large openings in the uterus are made, and Isaac’s mother, Leslie, didn’t require a large opening for the repair, allowing for faster recovery. The hope was that this approach would close a gap in Isaac’s back that meant he would be born with spina bifida, the most common type of NTD.

A tough choice, but a lot of faith

Chris and Leslie knew that they wanted to have a baby this year, and they hoped that it would be a boy. All signs pointed to that dream becoming a reality — until a routine ultrasound at 18 weeks. On the way back from that appointment, they received a call from their local hospital north of Boston. “They told us that there was a problem and no cure,” remembers Chris. “We were super confused and scared.”

Later that week, the couple was referred to another hospital and then to the Maternal Fetal Care Center, in affiliation with Brigham and Women’s Hospital (MFCC). They met first with nurse practitioner Bonnie Zapolin, who explained more about Isaac’s condition and how the MFCC might help. “She’s a real sweetheart,” says Chris. “The best of the best.”

Next, the Center’s director, fetal surgeon Dr. Alireza Shamshirsaz (“Shami”), discussed their options with them. Although Chris and Leslie hadn’t known that mini-laparotomy fetoscopic NTD repair was even possible, they ultimately chose to pursue it when they learned that Leslie was eligible for it. “It was hard to know what the best choice for Isaac would be, but we had faith that everything would be okay,” says Chris. “We were tired, but we were ready.”

Undergoing fetoscopic repair for NTD

Although Shami had previously performed about 150 in-utero NTD repairs using different techniques (open and laparotomy-assisted fetoscopic repairs) elsewhere, the rest of the team — including neurosurgeon Dr. Weston Northam, pediatric surgeon Dr. Farokh Demehri, and fetal surgeon Dr. Eyal Krispin — sharpened their skills using a lifelike model created with Boston Children’s Immersive Design Systems (IDS). The team also collaborated with Dr. Ramen H. Chmait, director of Los Angeles Fetal Surgery at CHLA-USC Fetal-Maternal Center, who developed this technique, and Thomas Cunningham, MSN, fetal surgery nurse, Houston.  

During the repair, which took about four hours, the surgical team closed the defect in Isaac’s spine while operating through tiny ports in Leslie’s uterus. “I think I was more scared than her,” says Chris, who breathed a huge sigh of relief when he learned that the procedure was a success. “Leslie is absolutely a superhero.”

Because Isaac was breech, he was born at 34 weeks and two days via a c-section procedure delivery at nearby Beth Israel Deaconess Medical Center (BIDMC). “The first time I heard him cry, I burst into tears,” says Chris. “He is such a beautiful child.” While Leslie recovered under the care of her BIDMC nurses, Isaac was transferred to Boston Children’s NICU, where he had some special visitors: Drs. Krispin and Northam, Shami, and Bonnie.

‘Totally amazed’

Today, Isaac’s back is healing nicely and, while he’ll need lots of follow-up appointments, his parents expect that he’ll be just fine. Meanwhile, Chris and Leslie are settling into life as parents of a newborn — complete with late-night feedings and sleepless nights. “He’s a sweet baby, but he’s pretty grumpy, especially when he’s hungry,” laughs Chris.

Still, the couple is grateful for the care Isaac has received and can’t wait to soak up every moment with him.

“We’re totally amazed by this experience,” says Chris. “He’s perfect — and that’s incredible.”

Leslie agrees. “Isaac is a miracle,” she says. “We hope our experience inspires and gives hope to parents in similar situations.”

Learn more about the Maternal Fetal Care Center.