A cord blood deposit?
Expectant parents must make several important medical decisions. Among them: whether to have prenatal genetic testing, request pain medication during labor, strive for a natural birth or circumcise a male baby?
Perhaps one of the most overlooked parts of childbirth preparation is whether to save or donate the infant’s umbilical cord blood.
Umbilical cords are usually discarded as medical waste. But the potential uses for cord blood are growing, making it imperative that families understand their options, including whether to pay to have the blood stored for possible use in the event of their child’s illness or to donate it to a public bank so it’s available to any child who may need it.
“I think every couple who is pregnant should look into this and make a decision for themselves about what to do,” says Dr. Charles Sims, co-founder of the California Cryobank, which offers private storage. “Every doctor treating them should also be informed.”
The treatment of Sacramento toddler Dallas Hextell, profiled in a recent Times story, has been used to highlight the promise of private cord blood banking, even as researchers caution against putting too much stock in still-preliminary research.
After being diagnosed with cerebral palsy, Dallas was given an infusion of his own cord blood that his parents say greatly reduced his symptoms.
Umbilical cord blood contains stem cells, a coveted commodity in medicine. Stem cells from cord blood -- particularly blood supplied by unrelated donors -- have been used to treat diseases such as cancer and some genetic conditions. Those cells can be used to treat many of the same illnesses (multiple myeloma or leukemia, for example) as stem cells found in bone marrow, but they’re easier to use because they’re already banked and the tissue types of the donor and recipient don’t have to be as closely matched. Such treatments appear to be as successful as bone marrow transplants in some cases.
Moreover, the emergence of regenerative medicine has created potential new uses for cord blood. Some researchers are working to coax cord blood stem cells into becoming a range of tissues that might one day be used to treat an array of diseases or to repair injuries.
Viewing the promise of cord blood stem cells as a form of health insurance, about 5% of parents now bank their newborn’s cord blood, with about 80% of that going to private banks for the child’s own possible use and about 20% going to public banks.
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Private vs. public
The possibility that more families may choose to save cord blood for their own future use has created tension between proponents of private banking and public banking.
“There isn’t nearly enough awareness about cord blood banking. And pregnant mothers tend to get only one side of the story from private banks,” says Susan Stewart, director of the Blood and Marrow Transplant Information Network, an organization that publishes books and newsletters on bone marrow, stem cell and cord blood transfusion.
The number of privately stored units of cord blood, estimated at 500,000 nationwide, far exceeds those in public banks even though cord blood in public banks is much more likely to be used. An estimated 300,000 units of donor cord blood are available worldwide.
For that reason, several major medical associations have urged families to donate their baby’s cord blood to public banks.
“The beauty of harvesting these cells via the public banking system is that the chances of someone else using it are relatively great,” says Dr. William Shearer, a professor of pediatrics at Baylor College who helped write guidelines on cord blood banking for the American Academy of Pediatrics. “In the private system, the chances of using it are actually very low.”
Unrelated cord-blood transplants are increasing. An estimated 7,000 unrelated-donor transplants have been completed in the U.S., many of them in children. Cord blood is often used when someone who needs bone marrow cannot find a match among relatives or in the National Marrow Donor Program; success rates range from 40% to 80%.
“Cord blood is desperately needed,” says Dr. Karen Ballen, an oncologist at Massachusetts General Hospital who helped write cord-blood banking guidelines for the American Society for Blood and Marrow Transplantation. “We have thousands of patients nationwide who need a transplant for leukemia or lymphoma. Only about 30% have a donor in their family. They need to look for adult bone-marrow donors and only about 50% will find that. There is an urgent need to donate cord blood to help those patients. If we bank cord blood privately we are taking the opportunity away from someone who might really need it.”
A bill to increase donor cord blood collection in California has been introduced by Assemblyman Anthony J. Portantino (D-La Canada Flintridge).
Public banks are in particular need of cord blood from ethnic and racial minorities. Nonwhites have a much lower chance of finding a suitable cord blood or bone marrow donor because of the low number of nonwhite donors.
There is no cost to the family for donating cord blood to a public bank, and there are no known risks to the mother or infant. Collection is done shortly after childbirth; the mother must give a blood sample at the time of birth to check for infectious diseases.
“It takes a little more from families than just saying, ‘I want to do it,’ ” says Dr. Joanne Kurtzberg, director of the pediatric blood and marrow transplant program at Duke University and director of the Carolinas Cord Blood Bank.
Information about the donor is collected and kept confidential. If the child develops a genetic, immunological or malignant blood disorder, the parents or child’s doctor are supposed to notify the blood bank so that blood is not used.
The biggest problem for families who wish to donate is finding a public bank that will accept their offering. Despite federal legislation passed in 2005 to create a robust public cord blood banking system, collection is still available only in certain parts of the country.
“We’re working on a way to allow everyone to donate, but it’s not available yet,” Kurtzberg says.
Some public banks will accept donated cord blood units by overnight express courier. A resource list on how to donate to a public bank can be found at the Parent’s Guide to Cord Blood Foundation.
Interested parents should contact a collection program before the third trimester of pregnancy. Parents also need to see if the hospital they plan to deliver at contracts with a collection program (about 200 hospitals nationwide do so). They need to ask the doctor delivering the baby if he or she will collect the blood and if there is a charge. Additional instructions can be found at the Parent’s Guide to Cord Blood Foundation website.
Kurtzberg, one of the nation’s leading experts on cord blood transplantation, says public banks likely will eventually stock a wide variety of cord blood that will meet most people’s needs.
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Costs and standards
Advocates of the private system say doctors should not discourage families from private banking as long as they have been fully informed of their options.
“There has been an effort to pit public versus private,” says David Zitlow, senior vice president with Cord Blood Registry, a private blood bank. “In reality, both systems are needed. But as science advances . . . there becomes a strong argument for why you would need to save it for that child.”
The chances of a child needing his or her cord blood are estimated at 1 in 2,700, according to the American College of Obstetricians and Gynecologists, although higher and lower estimates have been issued by other scientists.
Parents who choose private cord blood banking should study the contract and their financial obligations. Costs are about $1,000 to $1,200 for collection and $100 to $125 a year.
The bank should provide information on its quality standards, such as whether it is accredited by the AABB, the organization formerly known as the American Assn. of Blood Banks. Kurtzberg says families should know that private and public banks use different criteria for storage and that the public system maintains more rigorous standards.
Doctors and others promoting private banking should disclose any financial interest in a private bank, according to the American Academy of Pediatrics. Information on private banking can also be found on the Parents Guide to Cord Blood Foundation website.
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latimes.com/cordblood
A poster child amid caution
Go online to read how Sacramento toddler Dallas Hextell, treated with his own cord blood, has become a symbol of the private storage debate.
