By Ziba Kashef, Editor at Large
There’s yet another decision that isn’t so cut and dried: saving your child’s cord blood. This update should clear things up
When Jenny Levine was pregnant with her first child, her ob/gyn gave her an info packet with a brochure on umbilical cord–blood banking. Apparently, the blood in her baby’s cord could be collected, saved, and possibly used for treatment if the baby or a family member got seriously sick. But due to the cost of banking—more than $1,000, plus yearly fees—Levine declined.
Three years later, when she was expecting her second child, Levine decided to take another look at cord-blood banking. Considering the family’s health history—cancer on her side, diabetes on her husband’s—she thought it might be worth it. After some research, and her discovery that one bank, Cord Blood Registry, offered payment plans and a discount coupon, Levine decided to save her second child’s cord blood.
She’s grateful that she did. At age 1, her youngest daughter, Chloe, was diagnosed with a type of cerebral palsy caused by a stroke that happened in the womb. Chloe was paralyzed on her right side, but Levine soon learned about a clinical trial at Duke University School of Medicine in Durham, NC—a stem-cell treatment using the baby’s own stored cord blood. Within days, Levine noticed a difference. “She said her nickname, Coco, which therapists had worked for weeks to get her to say,”
Levine recalls. While Chloe still has some impairment in her right hand, she’s a changed child, her mother says: “Chloe runs, she jumps, she climbs. She looks like every other little kid that you see on the playground.”
Levine’s story is exactly the kind of miracle cord-blood banking advocates have been talking up for years. Yet banking cord blood remains a puzzling practice, especially because you’re most likely to hear about it first during early prenatal visits, when there’s a lot of other stuff on your mind. And the medical community continues to debate it. Here’s what you need to know.
Nuts and bolts
Baby’s umbilical cord and the placenta contain stem cells, versatile cells that can morph into different cell types and be used in therapeutic transplants. Since 1988, more than 7,000 transplants of stem cells from cord blood have treated metabolic and immune system disorders and blood cancers, among other illnesses. Previously, these types of transplants were done with stem cells from bone marrow.
|Fact: In 2008, 36% of cord blood units used in transplants through the National Marrow Donor Program went to patients from racially or ethnically diverse communities.|
Parents interested in preserving their child’s cord blood have two options: public or private banking. If you donate your child’s cord blood to a public bank, it’s available to anyone who might need a stem-cell transplant—but collection and storage are free. Private banking, on the other hand, preserves the stem cells for your family alone, should your child or a sibling ever need them. For this privilege, you’ll pay between $1,200 and $2,000 for initial collection and banking, plus about $100 annually for storage.
Jenny Levine considered her daughter’s cord blood, banked privately, to be a sort of insurance policy—one that turned out to be a worthy investment. A key advantage of cord blood is that the stem cells derived from it are less likely to be rejected by a patient than stem cells from bone marrow.
Yet some critics of private banking point to the fact that cord blood is rarely used to treat the donor. Steven Joffe, M.D., a pediatric bone marrow–transplant physician at Dana-Farber Cancer Institute in Boston, recently conducted a survey of transplant physicians and found that doctors used privately banked cord blood in only a small number of cases. Why? “You wouldn’t give cord blood stem cells back to the same patient if you were treating a genetic disease where the cord blood contains the genetic problem,” says Joffe. “There you would insist on getting stem cells from someone who doesn’t carry the problem,” he explains.
While Joffe would argue that transplants with the patient’s own cord blood mostly treat rare conditions, fans of cord blood banking say this is changing. “If you look back 10 years, we were only talking about two or three diseases,” notes David Zitlow, senior vice president of corporate communications at Cord Blood Registry. “Now we’re talking about more than 70.” Zitlow points to the trials at Duke, where children like Chloe are being treated for cerebral palsy and brain damage, and at the University of Florida College of Medicine in Gainesville, where the focus is on type 1 diabetes. “The research is growing exponentially,” he adds.
The choice is yours
On both sides of the debate, experts support storing cord blood in public banks. “The value is enormous,” Joffe says. “Having public cord blood available is good for everybody.” This advice is particularly true for non-whites, Joffe adds, because there are few minority donors in the public-banking system.
Supporters and skeptics also agree that parents should do their homework. “It’s important to go through a process of education,” Zitlow says. “What are the cells being used for today, and what is research showing they might be used for in the future?” Advocates point out that medicine is constantly advancing: Doctors now know that it’s possible to collect stem cells from fallopian tubes removed during surgery, a patient’s own fat tissue, and baby’s first teeth (parents can even bank tooth stem cells like cord blood; check out stemsave.com and bioeden.com).
|We have a match!
At BeTheMatch.org/cord, a sponsored by the National Marrow Donor Program, you can find out if your hospital is set up to collect blood for public donation. If so, your donation will appear on an ever-growing national registry for patients seeking a match.
Family history is also key. Zitlow donated his first child’s cord blood to a public bank. But, after conferring with his physician about new research on diabetes, a disease that runs in the family, he decided to go private with child number two.
While Joffe’s research has been critical of private banking, he says there are cases where he would recommend it. “If I’m treating one of my pediatric cancer patients, and the kid comes in to see me and the mom says she’s pregnant, I would encourage her to save the cord blood because it’s possible that my patient might need it in the future,” he explains. He’d also support it in cases where there’s a family history of blood diseases such as sickle cell disease.
To find out more, visit the websites of unbiased sources such as the AABB (aabb.org), an organization that accredits blood banks, and the National Cord Blood Program (nationalcordbloodprogram.org), which also offers public banking. Then, talk to your ob/gyn about the pros and cons of your personal case. The American College of Obstetricians and Gynecologists has called on its 52,000 members to provide accurate information about umbilical cord–blood banking to patients—and to disclose any financial interest they might have in for-profit banks.
If you decide to go forward with either public or private cord–blood banking, rest assured, the process is quick and painless. After delivery, a nurse uses an IV or syringe to withdraw blood from the cord, preserves it, and ships it off to the bank for processing and storage. Once frozen, the stem cells may last for years, if not indefinitely. Whether the cells are used for your child, a sibling, a stranger, or science, know that your child’s cord blood has the miracle of life in it.
Thinking of going private?
To get you started, here are four private banks from across the country and what they say sets them apart from the rest.
Cord Blood Registry
Location: Tucson, AZ
Claim: Saved stem cells for almost 300,000 babies—more than any other bank
New England Cord Blood Bank
Location: Newton, MA
Claim: A cryogenic lab serving researchers for more than 23 years, now banking cord blood for 10
Location: Irvine, CA
Claim: Uses special processing systems that extract more cells and keep them viable longer
Location: Cincinnati, OH
Claim: Provides a specially designed, FDA-approved collection bag for C-sections
Ziba Kashef is editor at large at Pregnancy and the mother of two.