As two-week old Max prepared to go home to Wisconsin from Ann & Robert H. Lurie Children’s Hospital of Chicago with parents Chris and Mallorie, the newborn, cozy in his porcupine pajamas, was making history.
Max and Mallorie were the first at The Chicago Institute for Fetal Health at Lurie Children’s to undergo an innovative approach to repairing spina bifida before a baby is born. Known as the fetoscopic repair of open spina bifida (also called myelomeningocele, or MMC), Mallorie had the procedure when she was 25 weeks pregnant with Max, and then carried him for 14 more weeks before his birth.
“Looking back, we have no doubt that we made the best decision for him,” Chris said.
Mallorie was 20 weeks pregnant when her obstetrician discovered Max’s condition during an ultrasound, a “major shock” for the family, Mallorie said. After all, Mallorie’s pregnancy with her firstborn, a girl named Remi who is now 3, came with no complications.
“We thought this pregnancy would be a walk in the park, but then everything changed,” Chris said.
Without treatment, babies like Max with open spina bifida often face many long-term disabilities, including possible leg paralysis, bowel/bladder control concerns, and hydrocephalus (extra fluid in the brain).
Prenatal specialists at the children’s hospital nearest their home referred the family to The Chicago Institute. Two weeks later, Mallorie and Chris were meeting with the director of the Institute, Dr. Aimen Shaaban, and Dr. Robin Bowman, the Institute’s Director of Fetal Neurosurgery.
The family found out the Institute was prepared to offer an advanced approach to this type of surgery known as the fetoscopic repair, which would allow Mallorie to deliver her baby vaginally and could mean a better prognosis for Max.
“Finding out we would be the first to have it done here was a little scary, but also exciting,” Mallorie said. “The team is just amazing. We definitely trusted them and knew that they would be able to handle it.”
In mid-November, Drs. Bowman and Shaaban led the surgical team that operated on Mallorie’s abdomen and exposed her uterus. They made three tiny openings in the uterus that were approximately 1/8th of an inch in diameter. One opening allowed a small camera to be inserted into the womb. Working through the two other openings, Drs. Bowman and Shaaban positioned the baby and surgically closed the open spinal defect. The small uterine openings and abdomen were then closed.
The couple, who live more than three hours away from Lurie Children’s, spent their Thanksgiving at the Ronald McDonald House in downtown Chicago, where they stayed for a few weeks following surgery. They were released home prior to Christmas to celebrate with their toddler but returned in late January in preparation for Max’s birth.
In February, Mallorie’s obstetrician noticed Max was breech, and scheduled a C-section for Feb. 18. But early that morning, Mallorie went into labor, and Max arrived vaginally – and healthy – at 39 weeks.
Max stayed at Lurie Children’s for two weeks following birth and was already moving his legs and feet by the time he went home in March, a good sign for his future mobility.
“He is just doing so amazing,” said Mallorie. “We’re so thankful we were able to have the surgery. I can’t imagine having made any other decision.”