Mighty Blog

Zay undergoes fetal surgery to repair severe spina bifida before his birth

Trish, Jay and their two kids, including toddler Zay, are a military family. The Maryland-based couple’s connection to the Midwest Fetal Care Center, a collaboration between Allina Health and Children’s Minnesota, started in 2021, far from the Twin Cities. That’s when the then-expecting Trish went in for her first anatomy scan sonogram at her local doctor’s office.

“The sonographer could not get a picture of his lower spine,” Trish recalled.

Trish soon got another anatomy scan and a call from her midwife that evening. At that moment, Trish learned her unborn child had spina bifida, a condition that meant baby Zay’s spine was not forming properly in the womb.

Discovering the full extent of the diagnosis

Trish would learn Zay had a severe form of spina bifida called myelomeningocele (MMC). If untreated, Zay would have been born with a gap in the bones of his spine, and a tiny sac containing nerves and spinal fluid would have stuck out of his back. Babies born with this diagnosis can face health challenges including weakness, loss of feeling or trouble moving body parts below the level of their MMC.

“When we received the news, I just felt numb,” Trish explained. “It was difficult for me to accept that the child that we had tried so long for could have a possibly debilitating condition.”

Seeking answers

Zay and his parents’ 1,100-mile care journey to the Midwest Fetal Care Center in Minneapolis did not come without a few speedbumps for the active-duty military family.

“Thankfully, I had just transferred Commands and my new chain of command was accommodating and allowed me the time I needed to digest what was happening and get the care that I needed,” Trish said. “Furthermore, I was under civilian care, rather than military care and they were supportive in my care journey.”

Time crunch

Trish and her husband spent countless hours doing research and in doctor’s visits searching for a specialist to perform an in-utero spina bifida procedure called a fetoscopic MMC repair. The family’s referral to another health system connected the dots for their eventual arrival in Minneapolis. It all happened after a provider at a different hospital told Trish about Dr. Saul Snowise, medical director of the Midwest Fetal Care Center (MWFCC). The couple quickly jumped on a plane.

“My husband and I called Midwest Fetal Care Center on December 20, 2021, and received an appointment for the next day,” Trish said. “We actually left for Minnesota without a current authorization from [our health insurer] and arrived for our assessment appointment at Midwest Fetal Care Center with our suitcases. We received authorization that day to be seen.”

There, Trish and her husband met with Dr. Snowise; Dr. Joe Lillegard, the head of open fetal surgery at the MWFCC; and a multi-disciplinary team of highly trained maternal-fetal medicine experts. Trish shared how Dr. Lillegard advocated for her to get the delicate procedure to help Zay’s spina bifida before his birth – the clock was ticking.

“We were under a time crunch, as the in-utero fetoscopic surgery option had a cut-off of 25 weeks and we were days shy of that in my pregnancy,” Trish said. “We did not get an approval for the surgery [from our health insurer] until I was being prepped for surgery.”

Procedure day

On a cold December day in 2021, Dr. Lillegard performed Trish’s fetoscopic MMC repair procedure in-utero. After making an abdominal incision to expose Trish’s uterus and positioning Zay to allow access to his back, Dr. Lillegard made three, 5-millimeter incisions in Trish’s uterus. He then inserted a small camera, called a fetoscope, through one incision. Using the fetoscope to see Zay’s spine, Dr. Lillegard used “micro” surgical instruments to repair the unborn child’s spina bifida. The entire procedure was a team effort and also included experts from the Children’s Minnesota neurosurgery program.

The procedure was a success! Now all Trish could do was recover and wait until she could return home to Maryland to welcome her second child into the world.

“Honestly, we would have loved to have the opportunity to deliver [at your health system],” Trish shared. “Everyone was so nice and accommodating and the hospital room was superb.”

‘A very determined child’

Zay has grown into a busy toddler and is now receiving care close to home in the Washington, D.C., area. His local care team includes a urologist, orthopedic surgeon and neurosurgeon. He also participates in outpatient physical and occupational therapy.

Unlike other babies who have had a fetoscopic MMC repair, Zay does not have a special tube, called a shunt, to allow excess fluid to safely drain and naturally absorb within his body. Even better news – there are no indications he’ll need a shunt in the future either.

“All of his providers have expressed surprise in how well he has been progressing,” Trish said. “He’s a very determined child. He uses a walker, takes unassisted steps, loves cars and enjoys his toddler workouts.”