Emma: Conquering Myelomeningocele

A child’s first steps are very emotional for parents. But for Mallory and Derrick, steps of a different kind for their daughter, Emma, touched them the most. She used a walker for the first few years of her life but then one day at a friend’s wedding on a golf course, Emma wanted to play on the green.

“She literally just let go of the walker and it was like the scene from “Forrest Gump,”” says Derrick. “She hasn’t touched it since.”

It’s just one of the ways Emma’s been defying odds since before she was born.

Myelomeningocele (MMC) spina bifida diagnosis

Mallory’s pregnancy progressed normally until her 18-week ultrasound. That’s when her doctor said something didn’t look right. The doctor referred Mallory to a maternal fetal medicine specialist, but she and Derrick had to wait 10 days to learn what that something was.

When they met with the specialist, they asked Mallory and Derrick, “Do you know about spina bifida?”

They didn’t, but were about to become very familiar. Emma has myelomeningocele (MMC), the most severe form of spina bifida. It occurs when a baby’s spinal cord, spine and spinal canal don’t close properly and can cause various issues in the spine, brain, limbs and nervous system. Kids with MMC spina bifida often have delayed development and some can’t walk.

During the specialist visit, doctors painted a bleak picture for Mallory and Derrick, suggesting Emma would have a poor quality of life. They left that appointment in a haze. Then they sat at home for five hours in relative silence both researching MMC. They learned about the Colorado Fetal Care Center at Children’s Hospital Colorado and that’s when the rain cloud Mallory had been feeling over her head started to clear.

Fetal surgery for MMC

Mallory and Derrick decided they would do everything they could to give Emma a chance at a great life. Luckily, Emma and Mallory were perfect candidates for open fetal surgery for MMC. The procedure allowed our fetal surgeons to access Emma’s spine while she was in the womb and repair the opening in her spinal cord.

“When I learned this was an option, I knew we were going to do it if I’m a candidate,” says Mallory. “If it’ll help, there’s no question.”

“Mallory is a champ,” adds Derrick. “She never batted an eye.”

The surgery was successful, and Mallory and Derrick waited to meet Emma. Mallory then continued her pregnancy and Emma proceeded to grow. The longer Mallory could remain pregnant, the better, but Emma was eager to enter the world. Mallory gave birth to Emma 27 weeks into her pregnancy, and she weighed just 2 pounds, 8 ounces.

Derrick was in Colorado Springs the day Mallory was born to check on their home. When he got the call that Mallory was going into labor he rushed to our Center in Aurora and was greeted by Henry Galan, MD, one of our maternal fetal medicine specialists.

“As soon as I got in the hallway, I saw Dr. Galan and he grabbed me and put me in a bear hug,” says Derrick. “He said everything’s fine, got me in the scrubs and got me back there to meet Emma.”

Considering how serious MMC can be and how early Emma was born, she was doing well. Mallory says after birth their concerns were about prematurity as much as they were about MMC. Emma spent 113 days in our Level IV Neonatal Intensive Care Unit overcoming a heart murmur, lung disease and other complications. There, Mallory and Derrick met a team of nurses that helped support them through the early days of the coronavirus pandemic.

They took Emma home on July 1 and she’s been passing milestones ever since.

Living and thriving with MMC

At 4, Emma is doing incredibly well. She avoided the worst complications of MMC and is living a full life. Mallory says she’s cognitively already at a kindergarten level and is starting to read. She loves to go on walks to the park and library. Emma is a dancer and has loved riding horses in our Physical Therapy Program, which has helped tremendously with her core strength.

Mallory considers their care team her family — from the ultrasound technicians to the nurses to the doctors and beyond. They love coming to our Colorado Fetal Care Center reunions each year. Last year, she took some more emotional steps at the reunion.

Her providers hadn’t seen Emma without her walker before, so Mallory told her to go see Dr. Galan. She walked up and tapped him on the hand. He turned and happily exclaimed “Emma!”