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Families that are predisposed to certain diseases, that are ethnically mixed, that are adopting a newborn child, or that have a family member who may need a stem cell transplant should take special care to understand the value the cells may provide and their storage options.
Families should seriously pursue public banking, donation for research, or private banking instead of discarding their baby’s umbilical cord blood. We aim to be nonpartisan in our dissemination of information, but we believe that discarding your baby’s cord blood is a waste of a once-in-a-lifetime valuable resource.
Stem cells’ role is critical for regenerative medicine. A stem cell is a special type of cell because it is the basis for all the other cells in our bodies. Stem cells have the ability to develop into one of many different types of cells. This process of a stem cell becoming a specific type of cell like a skin cell, blood cell or bone cell is known as differentiation. The other unique ability of stem cells is to replicate quickly. Combined, these abilities can quickly replenish different types of cells, making stem cells a driving factor or major enhancement in the healing process.
Direct-donation umbilical cord blood banks function as an amalgamation of public and private banks. Direct-donation banks collect cord blood without charging fees. In addition, they accept autogenous donations and reserve them only for the family, especially for a family whose infant has a sibling with a disorder that may be treated with umbilical cord blood stem cells (Moise, 2005).
The stored blood can’t always be used, even if the person develops a disease later on, because if the disease was caused by a genetic mutation, it would also be in the stem cells. Current research says the stored blood may only be useful for 15 years.
Cord blood donation should be encouraged when the cord blood is stored in a bank for public use. Parents should recognize that genetic (eg, chromosomal abnormalities) and infectious disease testing is performed on the cord blood and that if abnormalities are identified, they will be notified. Parents should also be informed that the cord blood banked in a public program may not be accessible for future private use.
Umbilical cord blood can save lives. Cord blood is rich in stem cells that can morph into all sorts of blood cells, which can be used to treat diseases that harm the blood and immune system, such as leukemia and certain cancers, sickle-cell anemia, and some metabolic disorders. There are a few ways for transplant patients to get blood cells (umbilical and placenta, bone marrow, peripheral/circulation), but cord blood is easier to match with patients, and because it is gathered during birth from the umbilical cord, it’s a painless procedure.
Families with a history of diseases can greatly benefit from cord blood banking, as an insurance policy against possible future diseases. However, cord blood banking is expensive, can’t be used to treat everything, and your child may not even need it—at private cord blood banks, most is eventually discarded. Lastly, you should be aware that if the child develops certain genetic diseases, the cord blood will have the same genetic flaws.
Patients with leukemia, lymphoma, or certain inherited metabolic or immune system disorders have diseased blood-forming cells. For some patients, an umbilical cord blood or bone marrow transplant (also called a BMT) may be their best treatment option.
Insurance assisted payments: Some cord blood companies work with insurance companies that can help parents pay for cord blood processing and storage, particularly if one child in the family has an illness and might be able to benefit from cord blood use.
Shai was a feisty little girl whose mother used her scientific background to search for the best approach to cure her cancer. Shai narrowly escaped death many times, including a recovery that even her doctors considered a miracle, yet she died at dawn on the day that she would have begun kindergarten. Her mother went on to found this website and charity in her memory. Read more…
1. Spinal cord injury. In January, the Food and Drug Administration OK’d its first-ever human study of a medical treatment derived from human embryonic stem cells. The objective: help people with acute spinal cord injuries. While expected to assess only the safety of the treatment, the study also might show if the paralyzed volunteers can regain some feeling in and control over their lower extremities.
7. Lung diseases. From human embryonic stem cells, researchers in Texas have created transplantable sources of lung cells in the lab. Those lung cells could potentially be used to repair damage brought on by a variety of pulmonary conditions or by lung trauma resulting from a car accident, bullet wound, or sports injury. Unpublished studies using such cells have shown promise for tissue repair in mice with acute lung injury, the group reports.
Cord blood holds promise for future medical procedures. Scientists are still studying more ways to treat more diseases with cord blood. At Duke University, for example, researchers are using patients’ own cord blood in trials for cerebral palsy and Hypoxic ischemic encephalopathy (a condition in which the brain does not receive enough oxygen). Trials are also under way for the treatment of autism at the Sutter Neuroscience Institute in Sacramento, California.
Additional ethical concerns about umbilical cord blood banking involve the timing of clamping the umbilical cord after birth. Overall, the issue of when to clamp and cut the umbilical cord is controversial. There is no consensus on how early or how late in the birthing process the umbilical cord ought to be clamped and cut, although the cord obviously still provides nourishment and removes waste until it is clamped or spontaneously stops pulsing (Lothian & DeVries, 2010). However, some practitioners might clamp the umbilical cord early in an effort to maximize the amount of cord blood obtained for banking, and thus “short change” the child and allow the infant to become anemic (Drew, 2005).
After harvesting, the umbilical cord blood is taken to a cord blood bank where it will be tested to make sure that it is clear of disease and other contaminants. Before being frozen, a cryopreservant is added to the cord blood so that the stem cells are able to be frozen without damaging them, after which they are stored in a liquid nitrogen Cord Blood storage tank at –196 Celsius.
Over 95% of newborns’ cord blood stem cells fall into this category. It is unfortunate that public banking is not readably available and private banking is so expensive. Some industry leaders believe that as the industry grows, banking or donating cord blood will be as common as it is uncommon today.
Cord blood is the fastest growing source of stem cells in pediatric transplants, and ongoing research indicates that we’ve only just begun to harness the healing power of these amazing cells.3, 15 By collaborating with some of the country’s leading hospitals and research centers, ViaCord is helping to advance critical research in cord blood stem cell therapy and to unlock the promise of cord tissue stem cells.
Publicly banking your baby’s cord blood is a wonderful gift. Unfortunately, however, your chance of donating your baby’s cord blood is very low due to the regional and financial constraints of public cord blood banks. It is estimated that cord blood from less than 3% of all U.S. births can be collected and stored by the public banks. We support any efforts to increase the resources available for public banking.
Barker JN, Weisdorf DJ, DeFor TE, Blazar BR, Miller JS, Wagner JE. Rapid and complete donor chimerism in adult recipients of unrelated donor umbilical cord blood transplantation after reduced-intensity conditioning. Blood.2003;102 :1915– 1919
Prior to the cord blood being harvested you will need to complete a health history questionnaire, and provide a blood sample to check for disease. In most situations, you will also be required to sign a consent form to confirm your intention to have the cord blood harvested.
As a trusted resource for families, CBR offers Genetic Counselors on staff to help families make informed choices about newborn stem cell banking. Our team of certified professionals are available to:
A “clinical trial” is a study in human patients for an emerging therapy that has not been adopted as standard therapy. This website has pages that enable patients to search worldwide for currently recruiting clinical trials with ether cord blood or umbilical cord tissue MSC. The table below checks off all diagnoses that have ever been treated in clinical trials with cord blood or cord tissue, regardless of whether the trials are still open.
Wagner JE, Rosenthal J, Sweetman R, et al. Successful transplantation of HLA-matched and HLA-mismatched umbilical cord blood from unrelated donors: analysis of engraftment and acute graft-versus-host disease. Blood.1996;88 :795– 802
Properly preserved cord blood is long-lasting. Cord blood is stored in a nitrogen freezer (the same technology used to freeze donated sperm), so it can last for a long time. “The scientist who first developed cord blood preservation methods in 1990 has confirmed that some of the first specimens he stored 23 plus years ago are just as potent as fresh cord blood,” says Mary Halet, Director, Central Region at Be The Match, which is operated by the National Bone Marrow Foundation.
Lamaze International (2010) does not have a policy specific to umbilical cord blood banking; however, the organization has a specific policy that prohibits advertising of private cord blood banks in any Lamaze media vehicle. This policy was most recently updated and revised in July 2010. In addition, in their book, The Official Lamaze Guide: Giving Birth With Confidence, Lothian and DeVries (2010) reinforce the AAP’s position that expectant families are vulnerable to the marketing strategies of private cord blood banks. The authors go on to say that expectant parents should know that banking umbilical cord blood does not guarantee a cure. Likewise, there is no guarantee that a private umbilical cord blood bank will be able to adequately preserve the cord blood until a time when it is needed. One potential reason for being unable to preserve the cord blood is that the private cord blood bank could go out of business.
Donating your baby’s cord blood is a wonderful gift. The cells may be the perfect match for someone in desperate need of a stem cell transplant. Unfortunately, cord blood banking is still an extremely new industry; there are only a small handful of public banks in certain regions, and those banks are primarily focused on collecting cord blood stem cells from Hispanic and African American families due to the genetic diversity associated with those families. Please visit http://www.marrow.org/ for a list of public banks with their contact information. One other note: It is also a wonderful gift to be a bone marrow donor, and becoming one is much more available to the public, unlike cord blood banking. Please call your local blood bank or the American Red Cross for additional information on how to become a bone marrow donor.
An alternative to a related donor involves seeking unrelated HLA-matched adult allogeneic donors outside of the family.2,6,11 There are more than 7 million potential unrelated volunteer adult donors registered in the National Marrow Donor Program registry.17 Although the number of patients who receive unrelated adult allogeneic donor stem cell transplants continues to increase each year, many patients are unable to find a fully matched donor, which diminishes access to transplantation therapy. Nonwhite patients have a lower chance of identifying a fully matched unrelated adult donor because of genetic heterogeneity and lack of nonwhite donors. Over the past decade, unrelated-donor, banked umbilical cord blood has been shown to contain sufficient numbers of stem cells for successful transplantation between unrelated, partially HLA-mismatched individuals.19–23 With advances in the clinical practice of cord blood transplantation, most patients unable to find a fully matched adult donor can identify a partially matched cord blood donor.
According to the statement, “Families may be vulnerable to emotional marketing at the time of birth of a child and may look to their physicians for advice. No accurate estimates exist of the likelihood of children to need their own stored cells. The range of available estimates is from 1 in 1,000 to 1 in 200,000.” For this and other reasons, it is difficult to recommend that parents store their children’s cord blood for future use. The AAP policy states:
“This is a medical service that has to be done when your baby’s cells arrive and you certainly want them to be handled by good equipment and good technicians,” says Frances Verter, Ph.D., founder and director of Parent’s Guide to Cord Blood Foundation, a nonprofit dedicated to educating parents about cord blood donation and cord blood therapists. “It’s just not going to be cheap.” Although the American Academy of Pediatrics (AAP) states cord blood has been used to treat certain diseases successfully, there isn’t strong evidence to support cord blood banking. If a family does choose to bank cord blood, the AAP recommends public cord blood banking (instead of private) to reduce costs.
3. Heart disease. It’s the leading cause of death in the United States, and stem cells may provide some relief. Research is underway to see if injecting the cells into the heart could help regenerate heart muscle damaged by, for example, a heart attack. Again, researchers have reported success in rodents.
9. Sickle cell anemia. Stem cell researchers are exploring ways to correct numerous blood disorders, including sickle cell anemia. Mice have been cured of the sometimes-deadly condition after receiving transfusions of stem cells made from their own skin cells.
Most stored cord blood is discarded. At public cord blood banks, a unit of stored cord blood has a greater chance of being used to help a sick child or used toward stem cell research. Private cord blood banks, on the other hand, eventually throw away blood that a family no longer wants to store or use.
Carolinas Cord Blood Bank, established in 1998, is one of the largest public cord blood banks. It’s affiliated with Duke University, where trials are currently taking place to treat children with cerebral palsy with their own cord blood. Parents can mail in their cord blood donations and receive financial aid if they have a sick older child or family member who can be treated with cord blood.
It depends on who you ask. Although commercial cord blood banks often bill their services as “biological insurance” against future diseases, the blood doesn’t often get used. One study says the chance that a child will use their cord blood over their lifetime is between 1 in 400 and 1 in 200,000.
Americord offers parents the ability to collect stem cells from the placenta and umbilical cord soon after the child’s birth. These stem cells, obtained from cord blood, cord tissue and placenta tissue, can be used to help treat genetic diseases and other threats to the baby’s life. Placenta tissue stem cells can also be used to benefit the mother.
Cord blood can’t be used to treat everything. If your child is born with a genetic condition such as muscular dystrophy or spina bifida, then the stem cells would have that condition, says Dr. Kurtzberg. But if the cord blood donor is healthy and there is a sibling or another immediate family member who has a genetic condition, the cord blood could be a good match for them.
The American College of Obstetricians and Gynecologists (ACOG, 2008) recommends giving pregnant women information about umbilical cord blood banking that is free from bias. According to ACOG, the chance of a child or family member needing a stem cell transplant is about 1 in 2,700. Therefore, ACOG recommends the collection and banking of cord blood only when an immediate family member has a known diagnosis for which stem cells are currently being used for treatment, and not for potential future uses.
Medical shipping: Some cord blood companies use medical shipping companies to deliver cord blood; these companies guarantee that cord blood is kept a certain temperature and delivered to the facility by a certain time, typically within 24 hours of collection.
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Lamaze International has created a continuing education home study based on this article. Visit the Lamaze Web site (www.lamaze.org) for detailed instructions regarding completion and submission of this home study module for Lamaze contact hours.
Cade Hildreth is the Founder of BioInformant.com, the world’s largest publisher of stem cell industry news. Cade is a media expert on stem cells, recently interviewed by the Wall Street Journal, Los Angeles Business Journal, Xconomy, and Vogue Magazine.