Understanding Cord Blood Donation
Margaret Stephens of Fountain Hills, Arizona, first heard about cord blood banking around the time she became pregnant with her daughter, Sylvie, now 8 months old. "My family history of breast and colon cancer and lymphoma played a big part in my decision to bank Sylvie's cord blood," says Stephens. "Even though cord blood stem cells aren't being used to treat those diseases right now, research is ongoing and I really believe this will be the treatment of choice in the future," she explains. "I look at it more as insurance for her, and for me and other family members."
The Stephenses' primary reason for banking their daughter's cord blood -- peace of mind -- is one any parent can relate to. You do so much to prepare for your child's birth and ensure his or her life will be a healthy, happy one. So is cord blood banking one of the things you ought to consider? To decide, it helps to know something about how the process works, and what cord blood may be able to do (and what it can't), should you ever need it.
What Is Cord Blood?
Cord blood is the blood found in the umbilical cord and placenta. It's valuable because it's rich in stem cells, the primitive precursor cells that produce all blood cells. Because cord blood cells can morph into all sorts of other blood cells, they're ideal for treating diseases that harm the blood and immune system, such as leukemia, some cancers, sickle-cell anemia, and some metabolic disorders, says Mitchell Cairo, MD, chief of the division of pediatric hematology and blood and marrow transplantation at Children's Hospital of New York-Presbyterian at Columbia University. (For a complete list of diseases that cord blood cell transplantation may help treat, go to www.marrow.org.)
"For a whole host of disorders, cord blood is a potential gold mine for treatment and, in some cases, cures," says Nancy Green, MD, medical director of the March of Dimes. "It's not experimental; cord blood transplants have been in use for about 15 years -- they're accepted for childhood leukemia and other kinds of disorders."
It's important to note that cord blood stem cells are not the same thing as embryonic stem cells, which are controversial because to obtain them, the human embryo must be destroyed. Experts say cord blood cells have much the same potential as embryonic stem cells without the ethical problems.
There are potential limitations to using stored cord blood. Perhaps most significant, if a baby has a genetic condition, the stem cells would also have that condition, which often rules out using the stored cells. But if an immediate family member has a disease that requires a bone marrow transplant, cord blood from a newborn child in the family may be the best option.
Susan Jarvis-Orr, of Mesa, Arizona, had never heard of cord blood until her son, Brandyn, was diagnosed with acute lymphoblastic leukemia shortly after turning 2. "I was six months pregnant with Kaelyn when Brandyn was diagnosed," says Jarvis-Orr. "Brandyn's doctor recommended that we save Kaelyn's cord blood in case Brandyn needed a bone marrow transplant." The terrified parents did bank Kaelyn's cord blood, as well as the cord blood of two more children born after Kaelyn. Six months after finishing three years of chemotherapy, Brandyn's leukemia returned; his doctors scheduled a transplant and tested his brothers' cord blood cells to see if any were a match for Brandyn's. Devyn, it turned out, was a perfect match for Brandyn. Since the day of the transplant -- November 2, 1999 -- Brandyn has had no recurrence.
What Cord Blood May Do -- and What It Can't
Thankfully, Brandyn's story had a very happy ending. And for many parents or parents-to-be, hearing that cord blood cells are extremely promising for treating some devastating diseases is welcome news. But what's crucial to keep in mind is that all of the diseases for which cord blood transplantation might be used are extremely rare in the vast majority of families. The American Academy of Pediatrics notes that there are no accurate estimates of the likelihood of children needing their own stored cells; the available estimates range from 1 in 1,000 to 1 in 200,000. One expert puts the odds that you'll ever use the stored cells at 1 in 20,000.
That said, if you or any of your relatives have or have had one of these diseases, cord blood banking may well be something to consider seriously, if you can afford it. Private cord blood banking makes the most sense in families with children who have diseases that might be corrected with transplantation, says Joanne Kurtzberg, MD, director of the pediatric bone marrow and stem cell transplant program at Duke University. "That's a small minority of cases. An example would be another child in the family with leukemia, sickle-cell anemia, or an immune deficiency. In a family where everyone's healthy, there's no evidence that it will be useful."
One other limitation to keep in mind: It's possible that there might not be enough cells for a transplant. Dr. Green calls this a big issue for adults, as more cells are needed for a successful transplantation in an adult or an older teen, since they weigh more.
It's also not clear how long cord blood cells are viable when stored. "The only data we have is for 15 years," says Zbigniew M. Szczepiorkowski, MD, chairman of the cellular therapy standards committee of the American Association of Blood Banks. "But the way we store cord blood now may be better than it was 10 years ago."
How It Works
If you opt to store your baby's cord blood, it will be collected in the hospital almost immediately after you give birth but before you deliver the placenta, ideally. (You can still bank your baby's blood if you have a c-section, and probably if you have a multiple birth.) The bank will send you a collection kit before you deliver; your doctor, midwife, or a nurse uses this to collect the blood. Then a courier sent by the bank typically comes to the hospital to pick up the kit and take it to the bank, where it's processed and stored in a bag or vial that's then frozen in liquid nitrogen. There is no risk to the mother or baby in collecting the cord blood cells, which would otherwise be discarded.
Storing your baby's cord blood cells doesn't come cheap: If you opt for one of the approximately 15 companies offering private cord blood banking, you'll pay $900 to $2,000 for the collection and registration, plus about $95 per year for storage. In addition, nearly all banks require that the expectant mother be tested for various infections. Cryo-Cell, for example, tests for syphilis, HIV, hepatitis, cytomegalovirus, and human T-cell lymphotrophic virus (thought to be a precursor to leukemia). This can cost you hundreds of dollars more if it's not included in the bank's fee (Cryo-Cell includes testing), and your insurance doesn't cover it.
If your budget won't allow for cord blood banking, there are other options, stresses Dr. Kurtzberg. "People should know that if they can't do this because they can't afford it, or for some other reason, they haven't denied their child a chance at a transplant. Public banks have enough units, and in many cases it's not essential to have a related donor. People shouldn't be made to feel that they haven't done everything they could for their child."
Dr. Szczepiorkowski, who banked both his children's cord blood, adds that ultimately the decision to bank or not to bank is not an entirely logical one, and every parent must make the decision that's right for him or her. "This was an emotional issue for me and my wife. Scientifically speaking, the chances of using the cord blood are low, but not zero," he explains. "I want the best for my child, and this is one of the options."
Cord Blood Resources
Mary Halet, manager of the cord blood program of the National Marrow Donor Program (MDP), answers common questions:
- How many public cord blood banks are there?
There are 18 public cord blood banks in the U.S.
- Where does this blood come from?
Public banks work with individual hospitals. Women who give birth there are asked if they would be willing to donate their baby's cord blood, which would otherwise be discarded.
- If you donate your baby's blood and a family member needs it, can you get it back?
If no one else has used it, yes.
- Why aren't more hospitals participating?
Collecting, analyzing, and storing the cord blood is expensive.
- How do doctors get access to the blood?
The MDP acts as a clearinghouse for 13 of those public banks. So if a doctor associated with a transplant center needs cord blood to treat someone, she can use a computerized system to scan the inventory of those 13 banks to see what match is available. She would have to contact the other banks individually.
- What if there isn't a perfect match?
While a perfect match is ideal, lots of people have achieved good outcomes with a close match. To increase the odds of getting a perfect match, public banks are hoping for federal funding to support the acquisition of more cord blood. Public banks are also looking to diversify their ethnic registry by encouraging more minorities to donate.
If you do opt to bank your baby's cord blood, choose a bank accredited by the American Association of Blood Banks. Go to www.aabb.org for more information.
For comprehensive information on nearly every aspect of cord blood banking, visit parentsguidecordblood.com. The site is unaffiliated with any bank.
Lorie A. Parch is a writer in Gold Canyon, Arizona.
A Doctor's Response
To Bank or Not to Bank?
I am writing in response to your article, "Should I Bank My Baby's Cord Blood?" in the March issue. Cord-blood stem cells are used to treat blood- and immune-related diseases, but your article fails to mention the extensive, ongoing research to treat heart disease, stroke, diabetes, spinal-cord injuries, and an extensive list of potential applications.
Today, cord blood is used in the treatment of more than 40 diseases. And there are exciting clinical trials underway that will allow for a significant expansion in the number and volume of cells to accommodate transplantation in an adult. You said there are significant costs for maternal testing. Almost all companies that require infectious disease testing include the testing in their collection fees.
You failed to mention that almost all cord-blood banking companies have a "patient in need" program, where the company will provide the service for free or a nominal cost if there is a family member in need.
Jeffrey A. Marcus, MD Director of Clinical Research Atlanta Women's Research Institute
Originally published in American Baby magazine, March 2005. Updated April 2005.
All content here, including advice from doctors and other health professionals, should be considered as opinion only. All content here, including advice from doctors and other health professionals, should be considered as opinion only. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.