COLORADO SPRINGS, Colo. — To understand just how big of a deal it is to see four-year-old Emma Leiting walking, you have to know that her parents, Derrick and Mallory, were told she likely never would.
At just 20 weeks into their pregnancy, they were told their baby had spina bifida.
"It's a spinal tube defect in the womb," Derrick said.
Children with that diagnosis often cannot walk and can face several other health challenges.
"We were recommended to terminate the pregnancy because there was going to be no quality of life," Derrick said. "They advised that even a best-case scenario was still going to be a bad-case scenario. Mallory and I always tell people quality of life really is subjective and it's not anyone's determination to put that child in a box and say what would or wouldn't be a quality of life. There are plenty of kids with spina bifida who maybe are in a wheelchair, but that doesn't mean that they're not happy and don't deserve a chance of life."
The Leiting's were referred to Children's Hospital Colorado in Aurora. Dr. Henry Galan and a team of specialists were ready to help.
"Spina Bifida occurs with a frequency of about one in 1000 to one in 2000 pregnancies," Galan said.
The couple was told about a fetal surgery that could improve Emma's prognosis. It's called prenatal myelomeningocele repair, or MMC repair. The team would take Emma out of the womb and then place her back in to continue developing.
"Mallory had an incision made on her uterus and once the uterus is open and the baby's buttocks is brought up, then the neurosurgeon together with the pediatric and fetal surgeon come in and they remove the cystic component," said Galan.
The biggest risk: preterm birth.
"The average gestational age for delivery of these babies is around 34 weeks in the pregnancy," said Galan. "About 46% of these deliver prior to 34 weeks, about 13% prior to 30 weeks, much like Emma's case, and then you're laying prematurity complications on top of the complications that can come with spina bifida."
Emma was born at 27 weeks weighing 2.4 pounds. It was one of the few moments over several months when her father was not by her mother's side in the hospital. He got a call as he was driving and rushed back.
"I am just shaking with adrenaline and I looked down the main corridor towards the nurse's station and I see Dr. Henry Galan standing there and he looks at me, and I'm shaking, and he just smiles," said Derrick. "He puts his arms out and he grabs me in a bear hug and just says, 'Buddy, everything's fine, everything's fine. Get your scrubs on, let's go.' That was a moment that I'll never forget."
Derrick rushed in to check on his wife.
"She just looked at me and she goes, 'She's really cute.' I said, 'I bet she is!' So I ran across the hall to the NICU and found her in there."
The couple did not get to hold Emma until she was 5 or 6 days old.
"(Mallory) got to hold her first," said Derrick. "But the first time I picked her up I thought that I wasn't sure that she was actually in the blanket that I picked up because I felt like I was just holding a lot of blankets. From the base of her of her head to the bottom of her butt was the length of the bottom of my palm to the tip of my middle finger."
Emma spent 3 months in neonatal intensive care. At one point, she stopped breathing.
"She was coded once, which means Code Blue," Mallory said. "I was sitting on my couch bed (with my head in my hands) just listening to them calling out numbers saying words, and finally, she was fine."
On July 1, 2020, the family of three went home, her development exceeding everyone's expectations. Crawling turned to walking with a walker, and eventually without.
"There was probably about 25 years of work in animal research prior to getting to the point where we could do this in humans," said Galan. "It takes a lot of dedication and perseverance and then little bit of a miracle doesn't doesn't hurt either."
A miracle the Leitings prayed would happen for their little girl.
"With Emma, we did get our miracle," said Mallory. "We were able to see the goodness, and just what faith can do. Some people have heroes, I gave birth to mine."
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