(June 2011) Saving or “banking” the cord blood from the birth of their daughter was almost an afterthought for Jenny and Ryan Levine. It turns out the price they paid for this simple procedure returned dividends far beyond their wildest dreams. Indeed, the adult stem cells from that cord blood proved to be priceless.
Born four weeks early and slightly underweight, there was nothing else particularly noteworthy about Chloe Levine entering the world. “A perfect little girl,” recalls her mother Jenny. “Just perfect.”
But within months, concern about this “perfect little girl” began creeping in. She couldn’t hold a bottle by herself. She couldn’t crawl. She wouldn’t talk. Initially, the doctors dismissed these and other apprehensions. “But I knew something wasn’t right,” says Jenny. “There’s no better way to diagnose something than a Mom’s intuition. You know your child better than anyone on this earth.”
Finally, Jenny and Ryan insisted on a closer look; a CAT scan was ordered and the results knocked them off their feet. Chloe had cerebral palsy (CP), a term used by doctors to describe various chronic conditions that negatively impact body movement and muscle coordination. CP is caused by damage to one or more specific areas of the brain and typically occurs before, during or shortly after the baby is born. In Chloe’s case, doctors believe she suffered a stroke sometime during Jenny’s pregnancy.
Experts say children with cerebral palsy may not walk, talk, eat or play in the same ways as most other children. In Chloe’s case, Jenny and Ryan were told that although Chloe’s physical problems probably wouldn’t get worse, they might not get much better anytime soon. “Your child is never going to be an Olympian,” is what Ryan remembers being told. “You’re going to be going through 18-20 years of therapy.” “They told us that she would always be weak,” says Jenny. “She would walk at some point, but they didn’t know when.”
So although cerebral palsy wasn’t threatening Chloe’s life, it had a tremendous impact on the two-year-old and her parents.
“I don’t know that you can describe it,” says Jenny in describing the emotional roller coaster ride where she was an unwilling passenger. “I don’t know that that’s an emotion that, unless you’ve been there, that you can make somebody understand. It’s crushing, it’s crushing. To see people stare, and I know they don’t do it intentionally. That’s just human nature. But to stare and to whisper and to have people bold enough to come up and ask me, it’s heart wrenching. You don’t want that. You don’t want that kind of attention for your child, ever.”
Despair turned to hope one morning when Ryan got a phone call from his sister. “Hey Ryan,” she said, “I got this great e-mail, I just forwarded it to you. It’s about a little boy that lives in Sacramento that has CP (cerebral palsy) and did an (adult) stem cell reinfusion at Duke University. They’re seeing some results and you’ve got to check this out.”
Ryan and Jenny knew they’d saved or “banked” the adult stem cells found in the umbilical cord blood and placenta at birth—the same adult stem cells needed for a reinfusion. The Levines contacted Duke University Medical Center and soon found themselves at Chloe’s bedside watching doctors reinfuse her own cord blood adult stem cells into her bloodstream.
It didn’t take long for the effects of the reinfusion to take hold with Chloe. Within a few days she was speaking her nickname—“Coco”—for the very first time. Strength appeared throughout her body and she started walking, riding her bicycle and doing other physical activities for the first time in her life. In short, Chloe was very quickly becoming…normal.
“Just recently she started playing soccer,” says Ryan with a broad smile. “The coach doesn’t even know she has CP. We’ve just kind of kept that to ourselves. No need to know. If he didn’t notice, we’ll leave it be. It’s impressive to see her doing that. She’s starting to ride a horse now. I don’t know what’s next; I mean, she’ll amaze us. She’ll find something else to do and she’ll amaze us.”
“Without the reinfusion of her cord blood stem cells, I truly believe we’d be living a completely different life,” says Jenny. “Chloe would be very far from where she is today, physically, emotionally, mentally. It’d be a totally different journey.”
Thanks to the dramatic turnaround in Chloe’s condition, the Levines have become energetic advocates for cord blood banking, which in a very real sense is the “lifeblood” of adult stem cell reinfusion procedures.
“There’s a lot of bad press, and there’s a large, large debate over the embryonic stem cells and whether they’re right or wrong,” says Ryan. “Everybody will have their opinion. But the fact is, the cord blood (adult) stem cells are there. They’re thrown away if you don’t use them. There is no harm done to anybody by storing them. We don’t know where science is going. Every day they’re making new advances. That’s my word to expectant parents is this is your one time. This is the one shot that you have to do that. If you give birth to that child and choose to discard those stem cells, you can never go back on that decision.”
Learn more about adult stem cells saved through banking cord blood by exploring these web sites:
Cord Blood Information
Donating Umbilical Cord Blood to a Public Bank
National Marrow Donor Program
National Cord Blood Program
Parents Guide to Cord Blood (including choosing public or family cord blood banks)
How to choose a private cord blood bank