“We have a unique approach that is a technique first established in Brazil by Dr. Lapa, and we brought it over to the United States. Dr. Quintero and I have put together a fetoscopic treatment that is FDA approved to repair open spina bifida, that is entirely percutaneous (there is no laparotomy and no hysterectomy),” said Dr. Ramen Chmait, Director, Los Angeles Fetal Surgery.
I saw my physician’s name come across my phone screen, and my heart sank. He explained that the ultrasound showed an abnormality, and he predicted a spina bifida diagnosis. I had no idea what that meant, and the rest of the words coming out of his mouth became a blur.
Spina bifida, which literally means “cleft or split spine,” is the most common permanently disabling birth defect in the United States. According to the Centers for Disease Control and Prevention, about 1,645 babies are born in the U.S. with spina bifida each year.
Growing up in the 1960’s, Dr. Diana Farmer’s mother taught Sunday school for disabled children where she first met children who had spina bifida.
“It was a really crummy disease,” Farmer said. Dr. Farmer is now leading innovative research, which holds promise of saving lives and lifetimes.
In the video she discusses the improvements that resulted from the initial fetal surgeries, including a reduction in the need for shunts. She now believes that with the latest breakthroughs involving fetal surgery and stem cells that the paralysis associated with spina bifida will be cured in her lifetime.
Most mothers would probably tell their child to sit down and stop standing on the chair in the middle of their family photography session. But when you’re told your son will never walk and he mischievously climbs onto a chair with no help and stands there, posing for the camera … well, you let him do it.