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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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Photos by Kristen Hines
In April 2011, Allison Thurman, then 2 years old, pulled herself up on her small metal walker. As big sister Audrey, 4, cheered her on and her parents Erica and Mike watched in anticipation, Allison took her first independent steps down the long, hardwood hallway of their St. Clair Shores home.
"It was really very exciting," Mike says.
Allison's first steps were monumental considering her circumstances. Allison was diagnosed with cerebral palsy, a brain abnormality that affects the nervous system and motor skills, just three months prior to taking steps with her walker.
The Thurmans credit Allison's rapid and significant progress that spring to an infusion of her umbilical cord blood cells, which they had banked after her birth. They did not know that the measures they took as an "insurance policy" for their child would someday help their daughter – and contribute to groundbreaking research.
Last year, Allison was accepted to participate in the first FDA-regulated clinical trial studying the use of cord blood cells to treat cerebral palsy – something one of Allison's many doctors encouraged the family to look into. It was merely two weeks after her first injection that Allison took those steps with her walker. Before the injections, she was unable to pull herself up to it without additional support.
For the Thurmans and many other parents of children with special needs, cord blood cells have been viewed as a potential miracle, one that could change their children's lives for the better and perhaps even eradicate many of the challenges of their disability.
And yet the full potential of cord blood cells has yet to be fully explored. According to the Cord Blood Registry (CBR), the world's largest private stem cell bank, only about 5 percent of expectant parents donate or bank the cells. Because of that low rate, studies are delayed or incomplete, hindering further scientific exploration and development of their potential – and an avenue of hope has been lost to scores of children with special needs.
How cord blood cells work
Cord blood cells are stem cells extracted from a newborn's umbilical cord just after the cord is cut.
These cells are "the body's building blocks for organ tissue, blood and the immune system," according to CBR.
"Cord blood is rich in hematopoietic stem cells (HSC) – the type of stem cell that gives rise to blood and the immune system," explains Kate Brown, content scientist at CBR.
In particular, cord blood stem cells have been found to have "regenerative potential," meaning they're able to "find injured cells and tissue in the body and initiate a healing process," CBR's website says.
Once the blood is taken from the cord, it is picked up from the hospital by a bank and processed to deplete red blood cells and plasma, leaving just stem cells. Then, it is frozen and stored, Brown explains.
Brown says cord blood cells "have been used for over 20 years in applications in traditional transplant medicine." In these cases, she says, cord blood cells have been used to treat cancers, diseases or blood and immune disorders that are also treated with bone marrow transplants.
Today, Brown says researchers are exploring "a whole new area" of cord blood cell use.
"The emerging investigation is into regenerative medicine – which is looking at cerebral palsy, traumatic brain injury and hearing loss," she says. "These are conditions where there's no cure at this point."
Clinical trials in regenerative medicine are focused on the use of a child's own cord blood cells to treat these non-life threatening conditions because it is viewed as "the best and safest option for their treatment," Brown says.
"Donor stem cells, even from a close relative such as a sibling, are not a perfect genetic match to the patient," she adds, "and so the cells will be rejected unless the patient undergoes a pre-treatment conditioning regimen to… suppress their immune system."
With a patient's own cells, however, "There is no risk that the cells will be rejected by the patient's immune system."
Parents have a few options when it comes to cord blood, though. They can bank the cells at a private bank for family use, she says, or they have the option of donating to a public bank, which would designate the cells for public use in transplant medicine. The third option – the one chosen by most new parents – is to throw cord blood away.
Brown says she hopes most OB-GYNs are explaining the value of cord blood that is being discarded as "medical waste," and that families are "at least educated on it and know their options."
However, it somewhat depends on the state, she says, adding that some states have legislation requiring education on the practice.
The law in Michigan encourages health care facilities to educate the public on the value of cord blood and to educate expecting mothers on their options for banking and donating, Brown says.
In Michigan, public health code specifies that health care professionals, facilities and agencies distribute "information to a pregnant woman before her third trimester of pregnancy."
It's definitely on the radar. And, for one local family, those stars aligned.
Allison's story
When Mike and Erica Thurman's OB-GYN presented them with a pamphlet about banking cord blood cells, Erica was about 15 weeks pregnant with their first daughter, Audrey. She read through the informational materials and signed up to receive the collection kit to take with her to the hospital.
"It was the 'just in case' for insurance," Erica says.
"We're just lucky that (Erica's) OB talked to us about all of the options," Mike says.
13 years ago, a baby was born, her name Hope. Hope was born and the one major item in our to do list prior to her birth and within 48-72 hours of her birth was to get her cord blood to our chosen cord blood facility that we use, cord blood registry. Cord blood Registry, the inovators that have paved the way for such a wonderful opportunity for new couples starting a new family. Having had several members of the family come down with cancer, diabetes and most recent open heart on one of our cousins, we know the value of banking cord blood. We are thrilled once again to see Metro Parent Magazine making its readers a part of their family by choosing to write about such wonderful topics as this one...i hope all your readers continue to research even more reading and findings on this topic, we saved Hope's cord blood 13 years ago and will continue to bank it yearly. Thank you Metro Parent for caring enough to share! Hope and Hope's Daddy give this article and Metro Parent a super four big thumbs up! Way to Go!