Lauryn Newkirk received a cord blood transplant in July 2010 at just 18 months old to treat hemophagocytic lymphohistiocytosis (HLH), a rare and life-threatening blood disorder. Today, she no longer has HLH and is an energetic, inquisitive 4-year-old.
Q: [Infant] I’m pregnant and have read that harvesting cord blood upon birth could save lives. We aren’t a high- risk family and I’m not sure if the financial cost of collecting and storing would work for us, but I’ve heard that you can also donate cord blood to those in need. Is this worth it?
A: Every four minutes, someone is diagnosed with a life-threatening blood cancer. For many of these patients, an umbilical cord blood or bone marrow transplant is their best and only hope for a cure.
However, most people are not aware that the birth of a child can signify new life in more than one way. Birth can be a lifeline for thousands of people with blood cancers like leukemia and lymphoma, and more than 70 other life-threatening diseases. They depend on the generosity of mothers who donate their babies’ cord blood to a public cord blood bank. This way, the cord blood can become a potentially life-saving treatment option for a patient. That’s because cord blood, like marrow, is rich in blood-forming cells that can be used to treat many life-threatening diseases.
As a source of cells for transplant, cord blood is incredibly valuable and unique. Donated cord blood does not require as close of a genetic match with a patient as marrow for a successful transplant. And because publicly donated cord blood is stored and readily available, it is particularly useful for those patients who need a transplant performed quickly.
Cord blood donation is completely safe for both mother and baby, as it is collected immediately after a baby is born and does not interfere with labor or delivery in any way. There’s also no cost to donate—public cord blood banks cover the costs of collecting, processing and storing cord blood units.
Expectant parents weighing the decision to privately bank or publicly donate their babies’ cord blood need accurate, objective information to make educated decisions for their family. Donated cord blood units cannot be reserved for a specific person, but are listed on the national Be The Match Registry, where they are available to any patient in need of a transplant.
Major medical groups, including the American Medical Association, the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics, generally recommend public donation of cord blood, because the probability of using family banked cord blood units is low and most conditions that could be treated later with a cord blood transplant may already be present in the cord blood.
However, storing cord blood for family use may be recommended when a sibling with a diagnosed medical condition could be treated with a transplant of cord blood from the new baby. Several public cord blood banks provide no- or low-cost banking options for families where a sibling may benefit from a cord blood transplant.
More donations mean more patients can receive the potentially life-saving transplant they need. In particular, there is a critical need for donated cord blood from babies whose parents are of diverse ethnic and racial backgrounds, because patients are more likely to match someone who shares their heritage. Currently, there are fewer cord blood donations from these populations on the Be The Match Registry, making it difficult for these patients to find a match.
A recent Be The Match survey found that of 1,000 U.S. adults ages 18 and older, only 27 percent were aware of the option to donate cord blood to a public cord blood bank. When provided with a brief description of the cord blood donation process and its life-saving potential, two-thirds said that they would consider donating cord blood to a public cord blood bank.
In part due to this low awareness, most cord blood is discarded, despite its potential. Cord blood donation is not available in every state, but is available in the Orange County area through the Cord Blood Bank at Children’s Hospital of Orange County and Stemcyte Cord Blood Bank.
Nothing else that offers so much hope comes with so little effort. For more information and to learn if you can donate, please visit BeTheMatch.org/cord.
Ms.Del Steckler, RN, BSN, MMA
Ms. Steckler is a manager of cord blood recruitment for Be The Match, a nonprofit organization operated by the National Marrow Donor Program, helping those with life-threatening blood cancers like leukemia and lymphoma.
Be the Match — bethematch.org
For over 25 years, Be The Match, in cooperation with the National Marrow Donor Program, has maintained a registry of more than eleven million potential volunteer marrow donors and facilitated more than 6,300 transplants in 2013.