Hearing the words ‘birth defect’ from her doctor was the last thing the expecting mother wanted to hear but, it led her to use her platform and test a new treatment.
ORANGE PARK, Fla. — Hearing the words “birth defect” from her doctor was the last thing an expected mother from Orange Park wanted to hear. But, by documenting her pregnancy and going through the journey, it not only made Jaiden Detrick internet famous, but helped doctors test out new kinds of treatment.
“He’s a miracle honestly,” Detrick called her son, Levi.
Saying it’s a miracle being able to watch Levi play isn’t an understatement, when two years ago, Detrick didn’t know his life expectancy.
Levi lives with spina bifida, a birth defect where the baby’s spinal cord doesn’t fully develop.
“‘It didn’t form in your body correctly,’ all of those words, I honestly felt like I was a failure to my unborn child,” said Detrick.
Hearing that her firstborn child would live with a birth defect was intimidating to Detrick and her husband.
“I was so ignorant to spina bifida, to special needs children, to the life we were going to have, I didn’t think I was ready,” Detrick told First Coast News.
This led Detrick to use her social media platforms to educate others about her unique pregnancy.
While spina bifida is a rare birth defect, Dr. Jason Blafft, a pediatric neurosurgeon with UF Shands Children’s Hospital, says babies with this diagnosis are more likely now to live longer by being able to do a spine closing surgery before the baby is born.
“It can significantly reduce the downstream effects like hydrocephalus that can develop from spina bifida,” Blafft said. “And it seems like the babies do a little bit better with their motor development in terms of their leg movements and strength.”
Although specialists like Blafft can’t predict the future of every spina bifida case, he says this kind of surgery is allowing patients like Levi see more success when it comes to their future health.
“Even if we close the gap and the defect at birth, they often went on to die in infancy of either brain problems that resulted, or kidney problems that can result later on in life, but now those largely have been eliminated,” Blafft said.
Seeing Levi now, Detrick says undergoing the surgery before she gave birth was one of the best decisions throughout her pregnancy. But still, Detrick and her husband don’t know how the condition will impact Levi’s life years from now.
“For him, he has full feeling in his toes, and that’s not every case with spina bifida, but he’s not walking yet,” Detrick said. “So, it’s one of those things where we don’t know if he’s going to walk.”
As Levi continues to get treatment, his mom hopes doctors can use his story to gain a better understanding of spina bifida to help future patients and parents.
