UPDATE August 24, 2020: The Oregon Cord Blood Program at OHSU Doernbecher is no longer active. Information about donating cord blood is available at BeTheMatch.org.
“It’s amazing that something once considered medical waste [umbilical cord blood] can now be used to save lives,” said Eneida Nemecek, M.D., project leader of the Oregon Cord Blood Program and director of the OHSU Doernbecher Pediatric Blood and Marrow Transplantation Program. “Unrelated umbilical cord blood donation may be the only chance for cure for patients who have exhausted all available treatment options and for whom no matched family members or adult unrelated donors are found for transplantation.”
Cord blood is a rich source of blood progenitor cells, cells that have the capacity to seed in the bone marrow and grow into healthy blood and immune cells, potentially curing many cancers, blood disorders and inherited diseases. There are only 21 public cord blood programs nationwide and none served Oregon ‑ until now.
Private cord blood banking is available through commercial banks for high fees, but the chance of ever needing a privately stored cord blood unit is very small, and these units are not available to those needing them the most: patients already awaiting a transplant.
That’s why a team of Doernbecher’s pediatric bone marrow specialists, with a grant from the Friends of Doernbecher ‑ a volunteer organization dedicated to long-term support of the children’s hospital ‑ have partnered with the Puget Sound Blood Center of Seattle, a well-established regional cord blood bank, to collect cord blood units in Oregon for public donation.
“We want to open the option of cord blood donation for all Oregonians and would like to increase the inclusion of donors of all ethnic backgrounds,” Nemecek explained.
Many patients, including 6-year-old Isabella Brown, 6, of Bend, have the chance to survive and be cured through cord blood transplantation thanks to the generosity of strangers around the world,
Isabella began her battle with acute bilineage leukemia, a rare blood cancer. The only potential for cure was a stem cell transplant. But, the odds of finding a matched sibling or relative donor were slim ‑ less than 25 percent, according to Nemecek – and the probability of her finding a match was further compounded by her mixed ethnicity.
“While Caucasian patients have a 75 percent chance of finding an unrelated donor, ethnic minorities have much lower chances, ranging between 2 percent and 30 percent,” said Nemecek.
Although a bone marrow transplant was the best treatment option, none of Isabella’s family members, and not one of the 11 million registered adult donors, were a match. Numerous local bone marrow drives did not yield a donor. Her last option, and only potential for a cure, was an umbilical cord blood transplant.
After several months of difficult searching, an umbilical cord was found, and Isabella received her transplant in May 2008. She’s since had her share of ups and downs but continues to improve and enjoy life to the fullest with her parents and two brothers in Bend.
“Cord blood donation saves lives. There should be posters advertising cord blood donation on the back of every examination room door where pregnant women are seen,” said Jackie Brown, Isabella’s mother.
Taylor Harris, 2, of Portland, also has benefited from anonymous cord blood donation. She was born with a rare blood disease called familial hemophagocytic lymphohistiocytosis. She lacked a related donor, so Nemecek and her team turned to the National Marrow Donor Program (NMDP).
“We had a very difficult time finding a well-matched unrelated donor for Taylor due in part to her ethnicity. A cord blood transplant became the only option for cure,” said Nemeck. “The inheritance of blood genes is closely linked to ethnicity. Due to underrepresentation of non-Caucasian donors in existing registries, many people have trouble finding a donor. The NMDP has invested large efforts over the past decade to increase the ethnic diversity of their registry.”
Following a long search, a matched cord blood unit was found and Taylor underwent a successful transplant. According to her father, Terrance Harris, she is doing “excellent.”
OHSU Doernbecher’s Oregon Cord Blood Program coordinators will begin collecting umbilical cords from consenting mothers in the OHSU Mother/Baby Unit. Within the next year, however, they hope to extend this program of cord blood donation for public use to other hospitals across the state.
Collected cord blood units will be entered into the National Cord Blood Inventory, a federally funded program of the U.S. Department of Health and Human Services, and made accessible to patients in need anywhere in the world.
Donating cord blood is free for donors. The Oregon Cord Blood Program covers the cost of collecting, processing and storing cord blood units. The donor's name is kept confidential, and the recipient family’s privacy is protected. Names are not shared with any patient or transplant center.
“I have donated the cord blood of both my children,” said Nemecek. “It is safe and does not represent any risk for the mother or the newborn. I invite everyone in our community to consider entering the National Marrow Donor Registry. Giving bone marrow or donating cord blood could save the life of another human being,” said Nemecek.
OHSU Doernbecher’s new cord blood program, funded through a grant from the Friends of Doernbecher, OHSU Doernbecher Foundation, also will expand research opportunities at OHSU and nationwide. Cord blood units that, for one reason or another, cannot be used for treatment of a patient, may be made available to investigators studying methods of cord blood banking and the biology and therapeutic potential of cord blood-derived stem cells.
Nemecek plans to use the data collected from the Oregon Cord Blood Program to apply for future grants to extend the project beyond the Portland Metro area and across Oregon.
OHSU Northwest Blood and Marrow Transplant Program
Since 1996, more than 2,000 transplants have been performed in children and adults at OHSU and OHSU Doernbecher Children’s Hospital. Approximately 17 percent of these have been from unrelated volunteer donors, including cord blood donors.
OHSU Doernbecher Children’s Hospital
OHSU Doernbecher Children's Hospital is a world-class facility that each year cares for tens of thousands of children from Oregon, southwest Washington and around the nation, including national and international referrals for specialty care. Children have access to a full range of pediatric care, not just treatments for serious illness or injury, resulting in more than 120,000 outpatient visits, discharges, surgeries and pediatric transports annually.
In addition, nationally recognized physicians ensure that children at OHSU Doernbecher receive outstanding cancer treatment, specialized neurology care and highly sophisticated heart surgery in the most patient- and family-centered environment. Pediatric experts from OHSU Doernbecher travel throughout Oregon and southwest Washington to provide specialty care to some 2,800 children at more than 54 outreach clinics in 13 locations.
The National Marrow Donor Program
The National Marrow Donor Program comprises a coordinating center in Minneapolis, 128 U.S. transplant centers, 43 international transplant centers, 66 U.S. donor centers, and seven international donor centers. A public cord blood program was established in 1998 and now includes 21 U.S. and three international cord blood banks. In addition, the NMDP's extensive network includes 26 Cooperative international registries on 6 continents. Approximately 35 percent of the NMDP-facilitated transplants are performed internationally. Since its inception in 1987, the National Marrow Donor Program has facilitated more than 30,000 transplants for adults and children worldwide. Approximately 15 percent of these transplants have been made possible by cord blood donors.