Meant for Each Other – Alyssa & Baby Mila’s Surgery for Myelomeningocele

Mila is a bubbly toddler who smiles, waves and is very active. She is only 18 months old but has faced many more health obstacles than other toddlers.

At a routine anatomy scan, Alyssa and Kevin learned that their baby had markers for hydrocephalus (a buildup of cerebrospinal fluid in the ventricular system of the brain) and enlarged ventricles, but the doctor couldn’t discern if there was a defect in her spine. At 19 weeks, it was confirmed the next day that the baby had myelomeningocele (MMC). MMC is a condition that develops early in the first trimester when the bones in the fetal spine do not properly close. As a result, the spinal canal and spinal cord are open and exposed to the outside. Hydrocephalus with Chiari II Malformation- (part of the brain bulging through an opening near where the skull and spinal cord meet) typically occur. Learning about all the different details around the conditions felt overwhelming. “Those were probably the longest two days of our life,” Alyssa recounts.

It was apparent that fetal surgery was now going to be part of the pregnancy. The couple was within driving distance of a few different centers for fetal surgery. First, they researched which locations offered fetoscopic (minimally invasive) procedures. Alyssa heard about The Chicago Institute for Fetal Health at Lurie Children’s from her mom, who works in healthcare. With The Chicago Institute being the closest to home, they started the process to see if they would be good candidates for the fetoscopic surgery. 

Fortunately, it was the perfect fit. Alyssa and Kevin were put at ease by the three-phase appointment process to have all the necessary scans and understand all the different options for their care. Each session included a team meeting with all the relevant specialists including Dr. Aimen Shaaban, Director for The Chicago Institute for Fetal Health, and Dr. Robin Bowman, Co-director for Fetal Neurosurgery for the Institute. The parents asked questions about all aspects of the conditions and the treatment options.  

“Dr. Shaaban and Dr. Bowman were so helpful and honest in laying everything out on the table in such an orderly fashion that made our decision-making process easier than we could have ever hoped for,” Alyssa noted.

At 25 weeks into the pregnancy, a fetoscopic surgery was performed. Dr. Bowman and the team were able to close and repair the lesion exposing Mila’s spinal cord which protects the nerve tissue and prevents the hydrocephalus from becoming more severe.  

After the operation, Alyssa stayed near the hospital at the Ronald McDonald House in downtown Chicago for four weeks, then returned home where she remained on bedrest for the remainder of her pregnancy. "Looking back on all that time in bed just letting Mila cook wasn’t easy, but I sure am happy we did it.”

Mila arrived at 37 weeks uneventfully and was admitted to the Neonatal Intensive Care Unit (NICU) at Lurie Children’s for newborn care. At only 13 days of age, Alyssa and Kevin were able to take Mila home. They started routine check-ins with Dr. Bowman every two weeks, but now they see her every three months and the entire team every six months.  

Mila, now 18 months old, has movement and sensation in both legs. She is crushing her goals in physical therapy, thrilling her family by taking her first steps with a  walker.

Long before Mila, Alyssa studied childhood development and psychology with an emphasis in autism studies. She spent lots of time playing with and learning about children born with different conditions. Now, it seems that it prepared her for a purpose much larger than a career.  

“Everything happens for a reason,” she said. “Every day it becomes clearer that we were made for Mila and she was made for us, our life is so much better with her in it.”