The Promise of Cord Blood for Kids with Special Needs
Stem cells could offer a better life for some children, like a little girl with cerebral palsy here in southeast Michigan. Will more families explore the possibilities?
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So, when she was pregnant with Allison, "There wasn't really any question if we were going to do it," Erica says. "We said, 'We did it with one, we can't not do it for the other.'"
In March 2009, Allison was born at 32 weeks – almost two months premature – and spent about two weeks in the neonatal intensive care unit.
It wasn't until Allison was around 7 or 8 months old that the Thurmans started realizing she wasn't reaching her milestones, Erica says.
"We talked to our pediatrician(s), and they were indicating that we had to allow some time for prematurity," Erica says.
Allison eventually began physical therapy around age 1, and the family began taking her to a neurologist, as well as a physical medicine and rehabilitation doctor. In December 2010, she was clinically diagnosed with cerebral palsy. And, after an MRI, they were given the definite diagnosis in January 2011, the Thurmans say.
"About half of the kids who have cerebral palsy were born premature," says professor Seth Warschausky, who works with the Cerebral Palsy Program at the University of Michigan in Ann Arbor. Cerebral palsy can affect multiple things, including mobility, hearing, vision, attention span and thinking in general, he explains.
According to the U.S. Centers for Disease Control and Prevention, cerebral palsy is the "most common motor disability in childhood."
It was after the clinical diagnosis in late 2010 that Erica mentioned to one of Allison's doctors that they had banked her cord blood cells at birth. That doctor encouraged the family to research clinical trials involving cord blood cells and cerebral palsy – which led them to Dr. James Carroll's clinical trial at Georgia Health Sciences University.
The cerebral palsy trial
About two years ago, Carroll, chief of pediatric neurology at GHSU, launched the first FDA-regulated cerebral palsy clinical trial. It's evaluating the use of a child's cord blood cells to ease cerebral palsy symptoms, making it one of a small number of studies looking into regenerative medicine.
"The hope is it would promote healing in the injured part of the brain," Carroll says. "We want to see if it does make a difference."
The study, Carroll explains, requires the participant to make four visits over the course of a year. Of the four visits, there are two infusions as part of the "blinded" study – meaning one infusion is a placebo and the other is of the participant's stem cells. It's unknown at which visit a participant will receive their stem cells. The other two visits are evaluations, Carroll says.
"A comparison is being made at the three-month period. Then, half of children would have received cord blood cells," he explains. "The third and fourth visits are check-ups to see how children are progressing or reacting to treatment."
The study requires participants to have cerebral palsy and access to their own cord blood cells. Because of the requirements, the study has thus far been limited and slow going, Carroll says.
"We're aiming for 40 (participants), but they've been very slow in being accessed – because most children with cerebral palsy don't have their umbilical cord blood," he says. "So we've had about 10 (participants)."
Since its launch, a second, similar trial at Duke University has kicked off. Like the Georgia study, Duke's study started about two years ago and is still in need of more participants.
Allison's first visit to Georgia was in April 2011, the Thurmans say – a trip made possible by CBR's nonprofit, the Newborn Possibilities Fund. The Thurmans banked Allison's blood with CBR, which qualified them for the study.
During that initial visit, Allison received her first infusion. The infusion itself took about five minutes, Erica recalls, but the hospital required the Thurmans to stay for 15 hours to ensure Allison's vitals were clear.
"I was thinking, 'How are we going to keep her entertained for that length of time?'" Mike says. "She was hooked up to a lot of monitors, so that's asking a lot of a 2-year-old to be hooked up for that amount of time."
As medical staff checked on Allison every half hour, the family kept her occupied with bubbles, toys, snacks and her favorite movie: Toy Story.
"Allison handled it much better than we did," Mike recalls. "She was an angel the whole day."
Afterward, the family returned to St. Clair Shores. And, about two weeks after the infusion, they were astounded by what they saw.
"We believe that she got the stem cells after her first visit," Erica says. "Within days of us returning from Georgia, we saw a dramatic increase in her vocabulary – and, within the month, she graduated from speech therapy." The Thurmans say that the October prior to that April infusion, Allison tested around the 12-month mark in speech. By mid-May 2011, the speech pathologist reported Allison had tested above her age group, Erica says.
Mike and Erica also noticed improvements in Allison's mobility after the April infusion.
"Allison was walking with a walker during therapy and needed to be supported by her hips before we left," Erica says, "and within two weeks after the first visit, she started independently pulling herself up in her walker – and walking by herself in the walker."
Why are so few parents banking?
Multiple studies are working to prove the benefits of saving a child's cord blood cells. And, for studies in regenerative medicine, it is necessary for participants to have access to their own cells.
However, many studies like the one Allison participated in are delayed due to a low number of children having access to their cord blood cells.
The CBR reports that "95 percent of the time, this source of potentially life-saving stem cells is thrown away as medical waste."
Three out of every four expectant mothers "consider themselves 'minimally informed' about cord blood banking," CBR adds.
"It is difficult to know exactly why the number of families that choose to bank is not greater," CBR's Brown says. "One possibility is that many families are simply unaware of the value of the stem cells in cord blood."
CBR, she adds, is working to educate more people on the benefits of cord blood cells so that fewer cells are discarded after birth.
The bank, Brown says, recently launched a website offering an interactive outline of options for cord blood banking. It also works with the medical community to provide resources and information, she says.
Current clinical trials could also help spread the word on cord blood cells, Brown adds.