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Boy illness-free after stem-cell treatment

Banked cord-blood used to treat pediatric myelodysplasia

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POSTED: December 7, 2012 1:16 p.m.
Photo by Danielle Hipps/

R.J. Freeman and his sister Mary ride their bikes near their Hinesville Home. R.J. recently marked one year illness-free, thanks to banked cord blood, which was used to treat his pediatric myelodysplasia syndrome with refractory cytopenia.

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Hinesville kindergartener R.J. Freeman, 6, loves to play outside with his sister Mary, 3.
On a recent night, the Joseph Martin Elementary student helped his dad turn on a bevy of Christmas decorations and bounded around the yard after Mary. The two then rode their bikes around the cul de sac before R.J. stomped his sister in a race.
But unlike most of his peers, R.J. marked one year without illness in November — a milestone that means he can look forward to a future without immunosuppressive drugs or bone-marrow transfusions.
“If we hadn’t stored the cord blood, his quality-of-life would be totally different than what he has now,” his father, Staff Sgt. Robert Freeman said.

R.J.’s story

When she was expecting R.J., the couple’s first child, Michele Freeman learned about cord-blood banking from an advertisement in maternity store catalogue and researched the procedure.
According to a Kids
Health.org fact sheet from Nemours, cord-blood banking began in the 1970s and is the practice of collecting and storing blood from umbilical cords for potential future uses.
Cord blood contains blood-forming stem cells, which could treat diseases that require bone-marrow transplants such as leukemia or lymphoma, aplastic anemia, severe sickle cell disease and severe combined immunodeficiency.
“When we found out how much it was, initially I was hell-bent against it — ’cause it was like $3,000,” Robert Freeman said.
But the couple was won over by a medical pitch and banked with ViaCord.
“It’s like a life insurance policy — you hope you never need it … we didn’t have any pre-existing factors or anything like that that would prompt us to do it,” he elaborated.
When R.J. was 3 years old, he became ill while the family was stationed in Germany. He was diagnosed with pediatric myelodysplasia syndrome with refractory cytopenia, a condition that results in ineffective blood-cell production and can be a precursor to acute myeloid leukemia.
Rare in childhood, the disease can occur in previously healthy children. During a six-month period, R.J. alternated between blood and platelet transfusions two to four times each week and underwent nine bone marrow biopsies as doctors tried to determine his illness.
Once diagnosed, doctors recommended a bone-marrow transplant and even identified a nearby donor with a 100 percent match.
Then the Freemans remembered that they had banked their son’s cord blood and mentioned it to the German doctors.
“You’ve got the language barrier, and once they were able to understand what we meant by ‘cord blood,’ the looks on their faces would have been the same as if you took a platter of, you know, sweets into a kindergarten classroom and put it on a table and told them to go at it,” Robert Freeman said.
R.J.’s cord-blood cells were shipped from the ViaCord bank in the United States to Germany, and he was treated in May 2010. Twenty-one days later, R.J.’s platelets and hemoglobin numbers started to rise, and he was discharged from the hospital a month after treatment.
Robert Freeman said that to his knowledge, R.J. is the first patient to be treated with cord blood for pediatric myelodysplasia syndrome. Now, his only course of treatment is having blood tests every six months.

Cord-blood banking

Dr. Jeffrey Marcus, an OB/GYN at North Atlanta Women’s Specialists, is considered to be an expert in cord-blood banking. He has not treated R.J. but spoke about banking by phone.
Marcus did not provide a percentage of parents who choose to bank, and he does not typically give his patients a percentage because, he said, “I don’t want to make them feel bad if they can’t afford it.”
He said he explains to his patients that it’s a technology that is in its infancy and its utility is expected to expand.
“The problem with cord blood banking is that you only have one opportunity to do it,” he said.
As for the issue of cost, Marcus admitted it’s expensive but said companies frequently offer promotions because it’s a competitive market. And many also offer financing, he said.
In September, Piedmont Atlanta Hospital received a grant from the Abraham J. & Phyllis Katz Foundation that will assist the facility in becoming a public cord-blood collection center, according to a hospital release. It partners with the nonprofit Cleveland Cord Blood Center.
Currently, 169 people in Georgia are searching for an unrelated donor match to save their lives, according to BeTheMatchFoundation.org. An unrelated donor match may come from donors providing bone marrow, peripheral blood, or umbilical-cord-blood stem cells.
Marcus emphasizes that there are no guaranteed matches through public banking. A KidsHealth.org fact sheet from Nemours said most medical organizations — including the American Academy of Pediatrics — recommend public donations whenever possible.
“Stem cells from cord blood from both related and unrelated donors have been successful in many transplants,” the site said, adding that blood-forming stem cells are highly adaptable and therefore do not need to be a perfect match to create a successful stem-cell transplant.
The Nemours sheet also said there are several factors to consider when weighing private donations, such as the cord-blood bank’s financial stability; the number of samples processed in the facility; whether the facility allows the blood to be transferred; what would happen to the sample if the facility were to close; and whether the yearly fees and maintenance costs are fixed or variable.
But for the Freemans, R.J.’s health proves that banking is worthwhile — and Robert Freeman adds that his greatest regret is not preserving his younger child’s cord blood.
“That is the best $3,000 I’ve ever spent in my life,” Robert Freeman said. “You see: he’s happy; he’s healthy; he’s normal.”

 

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