Spina Bifida Center

Patient Stories | Mia and Myelomeningocele

Mia Magee needs braces and a walker to help her move around, but she doesn’t need any help making friends. 

From the grocery store to the nearby park, Mia’s joyful personality is on display wherever she goes—saying hello to passers-by and always in search of fun. 

“She’s hilarious. She likes being funny and likes talking to everyone in the grocery store,” said her mom, Paige. “She obviously walks with a walker, but she plays and has fun like anyone her age.”

Mia, 2, was born with myelomeningocele (MMC), the most serious form of spina bifida, a congenital condition in which the spinal column does not fully form during pregnancy. 

Thankfully, successful surgeries and on-going treatment have helped her avoid major complications, and her continued progress since birth has exceeded her parents’ expectations.   

And while each day can bring new challenges, it also provides happiness. Her mom and dad, Paige and Luke, focus on the many things that their daughter can do—laugh, play, walk, slide, swing and so much more—and not the things she can’t do. 

“She will be limited the rest of her life. I don’t expect her to be playing baseball or anything like that. But there’s so much other stuff she can do,” said Paige. “When you get a diagnosis like [spina bifida], it feels like she won’t be a normal kid. But in reality, she is amazing.” 

From Diagnosis to Fetal Surgery and Treatment Plan 

When Paige and Luke first learned about Mia’s spina bifida diagnosis during Paige’s pregnancy, the need for surgery and the surgical options available, they focused on doing what they thought was best for her. 

So when they learned that Mia qualified for the fetoscopic MMC repair surgery, they decided it was the best option. Rather than wait until after delivery, they felt the prenatal surgery at Cincinnati Children's Fetal Care Center would give Mia the best chance to avoid major complications later in life.

“Our mindset was on doing the work upfront and giving her the best chance possible,” said Luke. “It was a higher risk, but we felt better taking the risk in the beginning rather than suffer complications down the road.” 

The successful surgery was performed 24 weeks into the pregnancy and was led by Charles Stevenson, MD, a pediatric neurosurgeon and co-creator of the Fetal Myelomeningocele Surgery Program at Cincinnati Children’s. These surgeries require a number of specialists. Also involved in Mia's surgery were Foong-Yen Lim, MD, surgical director of the Fetal Care Center, and Mounira A. Habli, MD, a maternal-fetal medicine specialist. 

To avoid any perceived pressure in choosing a particular surgery, families will meet with Dr. Stevenson only after selecting the fetal repair option. 

“Since I perform all of these fetal surgeries at Cincinnati Children’s, I do not want families to think there is ever any bias or pressure to have prenatal repair,” he said. “The decision to have prenatal repair is a very personal one, and it is not the right decision for every family.”

But it was the right decision for the Magee family, and Paige was able to deliver Mia naturally at 33 weeks. Mia then stayed in the Neonatal Intensive Care Unit (NICU), where doctors monitored her for neurosurgical and urological concerns related to the repair. They discharged Mia at 31 days after she met recovery goals set by Neurosurgery, Urology and NICU teams.

“For Mia specifically, although she did arrive a little early, she has done very well,” said Dr. Stevenson. “She is taking steps and walking with assistance.”

In addition, Dr. Stevenson notes that Mia has not needed treatment for hydrocephalus (a buildup of fluid in the brain). She has also completely reversed the structural defect in the back of the skull caused by her Chiari II malformation.

“She is making excellent developmental progress, and I am very pleased with her outcome thus far,” said Dr. Stevenson.   

Family Reserves Special Thanks for Surgeon

“Incredible” is the word Paige and Luke use to describe Dr. Stevenson and the care they received at Cincinnati Children’s. Not only for the surgical expertise but also after surgery and the surprise visit to the Newborn Intensive Care Unit (NICU) that Dr. Stevenson made to see how Mia and her family were doing. 

“He’s very personable, humble and easy to talk to. It wasn’t planned. He just showed up and checked in on our baby,” said Paige. “It makes you feel good that he didn’t forget about her. [It] makes you feel like he really cares about his patients.” 

Registered Nurse Jenetta Thomas is one of the nurse coordinators in the Spina Bifida Center who cares for Mia. She helps to arrange outpatient visits and respond to patient and family needs as concerns arise between appointments.

Thomas, along with Spina Bifida Center Director, Jason Woodward, MD, MS first met with Mia’s parents at her discharge care conference in the Neonatal Intensive Care Unit (NICU), then again at her first Spina Bifida Clinic appointment when Mia was 3 months old.

“Seeing Mia grow into such a sweet-natured little girl has been a lot of fun,” said Thomas. 

“Mia is known around the clinic for always wearing the cutest hair bows and giving us a smile or wave even on the longest visits in clinic. Her determination and the support from her family will be sure to carry her far.” 

Mia comes to the Spina Bifida Clinic every six months for follow-up visits, unless a new concern comes up before. And while clinic days can be long, they allow out-of-town families like Mia’s the option to see providers from across the hospital in one day and decrease the number of trips to Cincinnati. 

“At the Spina Bifida Center, we work as a team to make sure each child achieves their full potential,” said Thomas.

She also notes the range of available providers in the clinic, from neurosurgery experts to a registered dietitian. Mia, specifically, sees a variety of specialists within the Spina Bifida Clinic from Developmental Pediatrics, Urology, Physical Medicine and Rehabilitation, Neurosurgery, Orthopedics, and Bowel Management.

In October 2021, doctors performed tendon release surgery on Mia’s foot to help improve her walking. She’s also received Botox bladder injections to decrease pressure in her bladder and to protect her kidneys.

As part of her on-going physical therapy, Mia continues to increase her mobility from the waist down by performing different activities—like going up and down steps—to help her in everyday life.

“And movements that are outside her normal range,” Luke added. “To reach and stretch for things, and to run different ways to try and develop the muscles that she is not working in her daily life.” 

And, of course, to keep up with her many friends.

(Published February 2022)