Alyssa and Simon Anderson said their world stopped last fall when their baby was diagnosed with the most severe form of spina bifida, myelomeningocele (MMC), at their 20-week ultrasound.
Babies with this condition can have problems with mobility, bladder control and impaired cognitive development, among other complications.
After joining a support group online, the central Illinois couple found numerous recommendations to pursue treatment at The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital of Chicago.
“Everyone we talked to in our family, and online, said “go to Lurie Children’s,” Alyssa recalled.
The couple’s first visit with The Chicago Institute’s team just two weeks later, where they met its director, Dr. Aimen Shaaban, and fetal neurosurgeon Dr. Robin Bowman, who is also the medical director of the Comprehensive Spina Bifida Center at Lurie Children’s.
“I will never forget the sense of calmness I felt in speaking with them – and with their whole team. They made us feel like everything was going to be OK,” Alyssa said.
The Institute team told the family they were a candidate for an innovative a minimally invasive approach to repairing spina bifida in utero, called the fetoscopic myelomeningocele (MMC) repair. This approach could mean a better prognosis for their baby and would allow Alyssa to deliver her baby vaginally.
Watch the below video for a look at this innovative procedure.
They would be just the third family to have the surgery with the Institute. In December, when Alyssa was 25 weeks pregnant, she underwent the procedure. That surgery marked the Institute’s 100th fetal intervention surgery since it launched in 2017.
In this procedure, Drs. Bowman, Shaaban and their team close the defect on the baby’s back surgically before they are born. Ideally, following the surgery, the pregnancy continues to full term, at which point the baby is delivered vaginally and cared for by The Chicago Institute of Fetal Health’s expert team of specialists. As of July, the team has completed eight fetoscopic MMC repairs.
When Alyssa and Simons’ daughter, Emmaline, affectionately called Millie, arrived about six weeks early in February, she spent several weeks in the Neonatal Intensive Care Unit (NICU) at Lurie Children’s.
Now almost five months old, Millie has been home for a few months, gaining weight and delighting her parents and big brother, Henry. The family knows the surgery they chose for their daughter has set her on a path for success.
Already, the Chiari malformation, a defect in the base of the skull that often accompanies myelomeningocele and leads to complications with breathing and eating, has reversed.
“We are 100% certain we made the right choice for her and our family,” Alyssa said.
Click here to watch a Fox 32 Chicago segment about this family’s journey.