Banking on Baby’s Health
Here’s yet another decision that isn’t so cut and dried: whether to save your child’s cord blood. This update from the Director of the Save the Cord Foundation may help you decide.
Research surrounding saving your child’s own stem cells is growing by leaps and bounds. While it’s true that the vast majority of parents who privately bank blood taken from their baby’s umbilical cord at birth will never need or use the stem cells contained within, it’s also certain that the number of diseases treatable using cells from cord blood will continue to grow. Many lives have already been saved using donated and banked cord blood. The cells found in your baby’s umbilical cord blood, tis- sue and placental cells may have the potential to treat medical conditions affecting the immune, blood, cartilage, muscle, and nerve cells. Private banks have now expanded to also collect placental cells and cord tissue. Still, cord blood banking continues to be a confusing topic for new parents. The high price for banking, combined with a value that’s only theoretical, make it an easy issue to just ignore. Marketing, often playing on first-time parents’ worst fears, leaves moms and dads feeling both guilty and sticker-shocked. Many OBs don’t recommend or discuss the options for cord blood banking and moms aren’t aware that there are actually three options available to you: private banking, public donation, or donation for research.
Why Saving Cord Blood Has Grown In Importance
|We have a match! Banking on baby’s healthAt 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.|
In the past, life-saving transplants were done exclusively with bone marrow stem cells, which require a perfect match of 8 out of 8 protein markers. Cord blood transplants require only 4 out of 6 markers to achieve a match. Dr. Joanne Kurtzberg, Director of Duke’s Pediatric Blood and Marrow Transplant Program and Director of the Carolinas Cord Blood Bank, explains, “Cord blood is now accepted as a substitute donor source for all the standard clinical indications for bone marrow transplantation. Cord blood has provided donor cells for many patients who never would have had access to a transplant and never find a fully matched donor. It is especially important for patients who are not Caucasian because they are more likely to need to use a mismatched donor.”
The following stories illustrate why cord blood banking, public or private, can be so important.
Meet Rachel Fryar and her son Luke
Rachel and her husband had privately banked their first child’s cord blood and decided to also save Luke’s cord blood. After Luke was born, Rachel shared her concerns with the doc- tor that he wasn’t meeting his developmental milestones. He had trouble sitting up, kept his right hand tightly fisted by his side, and didn’t crawl. The pediatrician gave them a diagnosis of cerebral palsy, most likely caused by a stroke that happened in the womb. Rachel called the private bank where her son’s cord blood was stored. The bank told her about a clinical trial underway at Duke University in North Carolina that involved using umbilical cord blood stem cells to treat brain injury.
Rachel contacted Dr. Kurtzberg, who is a pioneer in the development of innovative stem cell therapies, including umbilical cord blood transplants and transfusions. At 15 months old, Luke received his own cord blood at the Duke clinic. Within a few weeks, Luke began to use his right arm. His balance also improved and within two months, he started walking unas- sisted. His progress was gradual but steady and today, Luke is running, walking and living an active life of a 6-year-old boy.
Meet Noah Swanson and his mom, Nancy
On a family vacation, Noah fell sick with an unexplained high fever and was rushed to the hospital where later doctors diagnosed severe neutropenia, or abnormally low white blood cell count. He was diagnosed with myelodysplastic syndrome (MDS) and refrac- tory cytopenia of childhood (RRC), two life-threatening conditions. Doctors recommended a bone marrow or umbilical cord blood transplant to save his life.
No one in his family was a match, so his physician began searching the national Be The Match Registry®. The Be The Match Registry has the most diverse listing of potential marrow donors and cord blood units in the world, with more than 10.5 million potential donors and nearly 185,000 cord blood units.
Cord blood transplants are a good option for patients who do not have a closely matched adult donor for bone marrow. Noah received his cord blood stem cell transplant from an unrelated cord blood donor from the New York Blood Center. Noah stayed in the hospital for 12 weeks. He was released the day before his 4th birthday and is expected to live a healthy, full life.
It’s Your Choice
Numerous private and public banks offer to collect and store umbilical cord tissue.
When asked about her thoughts on private banking, Dr. Kurtzberg says, “In families where there is an identified risk of conditions that could be treated with a transplant, it would make sense for the family to consider family or private banking. It’s not a bad investment if the family has the resources, but I wouldn’t want any family to feel like they were depriving their child of a vital therapy if they couldn’t arrange or pay for private banking.”
Review all the options for cord blood preservation to make an informed decision about what’s best for your family. In the absence of family medical history that would raise your baby’s risk, you should bank your cord blood privately only because it will help you sleep at night. If you don’t bank the blood privately, however, donate publicly, so the resource is there for others.
Private or family banking costs run from $900 to $2200 for collection plus $125 to $150 for yearly storage.
We recommend finding a bank with high standards for collection, shipping, processing and storage and a reputation for financial stability—remember, your baby’s cord blood will be kept at the bank for a long time. Private banks must also meet strict federal, state, and industry accreditation requirements and pass a voluntary accreditation standard specific to laboratory processing of cord blood, such as AABB or the Foundation for the Accredi- tation of Cellular Therapy (FACT).
The private bank you choose should pro- vide a dependable shipping container that keeps temperature stable in the hottest and coldest conditions. Most expectant parents make their private banking decision during the second and the beginning of the third trimester, but you can select a private bank almost up until the last week you are due.
Many parents who would like to privately save their baby’s cord blood stem cells, don’t bank because of the cost. Don’t be afraid to ask banks you’re considering about discount coupons and financing programs that can help you cut the cost. If private banking is important to you, you might even consider a baby shower to pay the fees.
Donating your baby’s cord blood means giving up ownership and control of the cord blood. Publicly donated cord blood units that meet criteria are listed on the Be The Match Registry and made available to any patient in need of a cord blood transplant. You can also save the cord blood for a family member with a medical need with a directed donation. Many public banks offer this option. You can learn more at http://bloodcell.transplant.hrsa.gov/cord/options/index.html.
Why is public donation important? Seven out of 10 patients in need of a transplant will not have a suitable donor match in their family. Typically, patients are most likely to match someone of their own ethnicity or race. The Be The Match Registry enables more patients of diverse racial and ethnic backgrounds to receive a transplant, because they can use cord blood instead of bone marrow.
Many physicians and birth educators only have private banking information and aren’t aware of public donation options. If you’re considering public donation, you need to start by your 28th to 34th week. You must meet health guidelines and complete the required paperwork.
“For most parents having a new baby, public cord blood donation is a way to help patients in need find a match for transplantation,” says Dr. Kurtzberg. “I would encour- age any family to donate regardless of their race or ethnicity.”
Donation to research is a growing trend in many hospitals nationwide. Check with your delivery hospital to see if this option is offered as a preservation alternative.
Review all the options for cord blood preservation to make an informed decision about what’s best for your family. Cord blood is simple and risk-free to collect. There is no pain for the mother or baby and saving the cord has no ethical considerations.
The results to date are compelling: cord blood is a unique resource that does improve and save lives.
— Charis Ober
Charis Ober is founder and Executive Director of Save the Cord Foundation, a 501c3 cord blood education and awareness foundation.