ORLANDO, Fla. – A 15-month-old from Central Florida is redefining what is possible for people born with spina bifida.
Ava Lynn Grace Reyes is a toddler doctors consider “twice-born.” Her face was on billboards across the country for World Spina Bifida Day 2019.
Her parents, Erika and Jorge Reyes, had experienced grief and difficult news in their journey to start a family for five years. After a miscarriage and two ectopic pregnancies, the couple turned to in vitro fertilization and were overjoyed to learn they were expecting a baby girl.
Reyes said it wasn’t until she was about 23 weeks pregnant that she got the diagnosis.
“She went and got the doctor and she just very bluntly walked in the room," Reyes said. “She was like ‘let me take a look at the scans,’ and she said, you know, there is something wrong with your baby.”
Ava’s spinal cord was not closing, causing a buildup of fluid. Myelomeningocele, commonly known as spina bifida, is diagnosed in about 4 in every 10,000 babies born in the United States according to doctors at Winnie Palmer Hospital. Doctors warned about serious risks including paralysis, breathing problems and cognitive delays.
After extensive testing, Reyes qualified for a new experimental fetal surgery at Winnie Palmer Hospital to open her uterus and close the defect on her baby’s spine while she was still in the womb.
Pediatric neurosurgeon Dr. Samer Elbabaa has performed the fetal surgery more than 70 times and operated on Reyes and her baby. Reyes’ water broke one week after the surgery at 27 weeks, which required an emergency C-section and 87 days in the neonatal intensive care unit.
“As soon as she came out, she was wiggling her toes,” Jorge Reyes said. “That was the first thing we were told that she wouldn’t do.”
After graduating from the NICU, Ava continued to defy the odds, crawling, standing, expected to walk on her own by her 18-month milestone.
"I don't want anyone to look at her like she's any different, I mean she's just a normal baby," Jorge Reyes said.
The fetal surgery is not a cure for spina bifida, but the Reyes said their daughter is living proof that it can change the quality of life for other babies diagnosed early.
“We got very, very lucky that everything happened the way that it did with Ava,” Erika Reyes said.
To follow Ava’s journey, check out her Facebook page.