Fetal Surgery for Myelomeningocele During the COVID-19 Pandemic: Henry’s Story

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In the midst of the pandemic, Whitney and Will turned to the fetal surgery team at CHOP for hope. There was no time to waste — their son Henry had been prenatally diagnosed with spina bifida, and they were determined to give him the best chance at a healthy life. Today, he is home in Virginia, doing well and bringing his family joy.

Henry and his family Whitney and Will were 18 weeks pregnant with their second child Henry when they learned he had myelomeningocele (MMC), the most severe form of spina bifida. Learning their child had spina bifida — a birth defect in which the spinal column doesn’t form properly — was devastating. Doctors near their Virginia home told them they had three choices: take no action, allowing the defect to progress and treat the condition after the baby’s birth, travel to a hospital that offered fetal surgery, or terminate the pregnancy.

Over the next couple of days, Whitney did her own research on the condition. The first resource she found was the Center for Fetal Diagnosis and Treatment (CFDT) at Children’s Hospital of Philadelphia (CHOP). The center’s team has the world’s greatest depth of experience managing pregnancies diagnosed with spina bifida and developed the fetal surgery techniques to treat spina bifida. The team had also recently helped publish national guidelines about ensuring safe and timely maternal-fetal care during COVID-19.

Despite being in the middle of a global pandemic, Whitney was determined to get care at the CFDT. She contacted the center and arrived at CHOP on June 15 for a full evaluation.

“It was scary in general not knowing how it would affect the pregnancy,” says Whitney about being pregnant during the pandemic. “Then, getting the diagnosis … I was so sad. I was crying all the time. It was really, really hard. As soon as we found CHOP, I felt so much better. Based on the online research I had done, I knew we were at the best place in the world for this. And everyone we interacted with at CHOP was so kind, caring and compassionate … it made everything feel less scary.”

Based on the online research I had done, I knew we were at the best place in the world for this. And everyone at CHOP was so kind … it made everything feel less scary.

Fetal surgery offers hope during a global health crisis

After the evaluation, the couple met with the center’s care team — including their maternal-fetal medicine specialist, Shelly Soni, MD, a fetal surgeon, a neurosurgeon, an anesthesiologist and their fetal therapy coordinator — to review test results, go over the diagnosis, treatment options and potential outcomes, and answer their questions.

Henry had hindbrain herniation and the ventricles in his brain were enlarged. The team explained that fetal surgery could prevent further damage caused by the hindbrain herniation, may prevent the need for a shunt after birth, and may prevent further leg paralysis. Whitney was nervous about having surgery during the pandemic, but confident that she wanted to go through with it.

“Visiting CHOP was my only interaction with the world at that time, so I felt pretty safe being in a place where everyone was masked all the time and was being very careful,” Whitney says.

On June 19, a multidisciplinary team led by fetal surgery pioneer, N. Scott Adzick, MD, MMM, CHOP’s Surgeon-in-Chief, performed the delicate surgical procedure, opening the uterus and closing the opening in the baby’s back while the baby was still in the womb. Whitney needed to stay in Philadelphia on bedrest for the remainder of the pregnancy, so the family rented a house near the Philadelphia Airport and hunkered down for the duration.

While on bedrest, Whitney was able to keep working remotely at her job in supply chain. Other than weekly follow-up appointments at CHOP and Will’s occasional trips to the grocery store, the family stayed quarantined until the delivery at 37 weeks.

On the morning of Sept. 14, 2020, Henry was delivered via C-section in CHOP’s Garbose Family Special Delivery Unit (SDU), the world’s first birth facility in a freestanding children’s hospital specifically designed for healthy mothers carrying babies with known birth defects. Located within the Center for Fetal Diagnosis and Treatment, the SDU allows moms to stay close by while their babies are treated immediately in CHOP’s Level IV Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit. Having this comprehensive care in one location is critically important to the well-being of babies born with complex congenital conditions.

Henry Henry weighed 6 lbs., 2 ounces at birth, and both he and his mom recovered well and are back home in Virginia now. Henry has a club foot, which will be treated with a cast over the next few months. Other than that, he has good range of motion in his hips and knees.

“He’s doing really well,” says Whitney. “He’s eating well, gaining weight, not fussy. So far, he’s been a really easy baby. Very cute and snuggly.”

Raising awareness and recognizing extraordinary care

Undergoing fetal surgery is rare even in normal times, but enduring this experience in the middle of a pandemic is truly extraordinary. Whitney and Will are thankful they turned to Dr. Adzick and the team at the CFDT to help them through this remarkable journey.

Although the COVID-19 pandemic has posed new and unfamiliar challenges to those delivering care to pregnant women and their fetuses, CHOP’s Center for Fetal Diagnosis and Treatment has continued to care for hundreds of expectant mothers from the across the United States. The CFDT team hopes Whitney and Will’s experience serves as inspiration to other parents facing a similar situation during this time of global uncertainty that they are not alone and the center is prepared to help no matter what is going on in the world.

“I’m so happy with how everything turned out,” says Whitney. “When I think about how I was feeling earlier this year … I didn’t know if the pregnancy would continue, if my baby would survive, if he would need surgeries after he was born. Everything turned out so much better than I hoped. I’m really thankful that this was possible. The whole course of his life is going to be different because we had the ability to do this.”

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