For all Stephanie Conner knew, her daughter would be born deaf, blind and with organ damage — the result of an often symptomless virus Stephanie had passed to her unborn child.
So when the girl, Madeline, was finally delivered at a Miami hospital, Stephanie and her husband considered it a major blessing that the girl’s biggest problem was her inability to hear.
Now, the LaBelle family hopes medical science will deliver another round of news verging on the miraculous: a stem cell cure (or partial cure) of Madeline’s hearing loss.
Madeline, who is nearly 2 years old, is the first person in the nation to take part in a new Food and Drug Administration (FDA) - approved study of stem cell treatment of sensorineural hearing loss.
Children’s Memorial Hermann Hospital in Houston and California-based Cord Blood Registry will eventually enroll another nine children in this first phase of the study.
The process is simple: Doctors inject the children with stem cells from their own stored supply. Because it is the patients’ own stem cells, there is little chance the treatment will produce side effects.
In theory, the treatment will adjust patients’ immune systems to encourage their bodies to repair themselves. In truth, researchers have no idea if it will work.
Earlier Italian studies on mice concluded that stem cells may help the body repair damaged cells in the ear and restore some hearing in these types of cases, according to a 2008 published report in the University of South Florida journal Cell Transplantation.
The only other available treatments for Madeline’s kind of deafness are hearing aids and cochlear implants.
“I’m expecting really good results,” Stephanie Conner said. “I feel like God put this here in front of us for a reason.”
Madeline’s parents have a reason to be cautiously optimistic. Two of three preliminary tests after the treatment in January showed improvement in the girl’s hearing, the family said.
This first phase will determine if the treatment is safe. Eventually, the study could span several years and include a much broader pool of participants.
Madeline’s involvement with the study involved a bit of little luck.
It started when Stephanie Conner randomly came across an article about parents who decided to preserve their child's stem cells. Stem cells that have shown promise as a treatment tool in a wide range of medical conditions. Stephanie acted on that information and banked her daughter's stem cell rich cord blood at birth.
Despite this study, many in the medical community urge parents to take their time before opting to store stem cells for themselves.
The American Academy of Pediatrics recommends against it unless children fall into a high-risk health category. Instead, the organization believes parents should donate cord blood to storage banks and make it accessible to any family in need.
Private storage is getting cheaper. Store-A-Tooth charges $649 for a one-time “processing/preparation fee” and $120 for the first year of storage.
For their part, the Conners are glad they did.