Wednesday, July 21, 2010

International Adoption & Bone Marrow Transplants

I posted recently about the case of 16-year-old Katie, adopted from China, who needs a bone marrow transplant. Unable to find a match from the bone marrow registry in the U.S., Katie's mother traveled to China in the hopes of finding a match.  In 2008, I posted about Lydia, adopted from China, who needed a bone marrow transpant.  Her family located birth family in China, but Lydia relapsed before a transplant could be accomplished, and she passed away.  In 2006, Deena, who was adopted from Thailand, was saved by a bone marrow transplant from her birth mother, whom her adoptive parents flew to the U.S. in the hopes she would be a match. Deena had been on the bone marrow registry list for years without finding a match. In 2002, China adoptee Kailee Wells was diagnosed with severe aplastic anemia and needed a bone marrow transplant.  In 2005, her parents quest for a donor led them to an unrelated donor in China.  Kailee is now 10, and is doing well.  In 1997, Zak, adopted from Thailand, found a one-in-a-million donor in the U.S. In 1996, it was a Korean adoptee looking to the homeland for a bone marrow match:

Brian Bauman's life reads like a traditional American success story: popular and determined, he was elected president of the student council at his Minnesota high school and went on to the U.S. Air Force Academy at Colorado Springs, Colorado, where he was majoring in math and physics. But in 1995, at age 21, Brian was found to have chronic myelogenous leukemia, an insidious form of the disease. Doctors told Brian's parents, Steve and Elaine Bauman, that their son would die within five years if he didn't receive a bone-marrow transplant.

At that point, Brian's story became a quest that would take the Baumans far beyond the borders of the U.S. For Brian was born Kim Sung Duk in South Korea in 1974. He was taken at age 3 to a Seoul orphanage by his unmarried mother and adopted six months later by the Baumans. To save Brian's life, his adoptive parents hoped to locate a Korean relative with compatible bone marrow, in a land where such a request is guaranteed to reopen painful psychological wounds. To many Koreans, adoption of any kind is considered shameful. Families who give away children, or even take them in, are careful to hide the fact from their neighbors, schoolteachers and the children themselves. During its impoverished postwar period, South Korea began sending thousands of children abroad for adoption--the number peaked at 8,800 in 1985--and that human tide is perceived as a national disgrace. The Baumans somehow had to track down members of Brian's birth family and persuade them to help the young man, who was in Colorado and, as he put it, "seeing goals slip through my fingers."
 A match was found for Brian, and he was interviewed on Korean TV in 2007, so is apparently doing well.

I think most people are aware of the effect of adoption on transplant issues -- at least aware that the lack of access to genetic relatives can be a problem.  This isn't just the case in international adoption -- domestic adoptees who are denied access to information about genetic relatives can have the same problem.  Genetic relatives are more likely to be a match.

But with international adoption, especially from Asian and African countries, there's another problem -- the difficulties of minorities finding a match on the national donor registry.  So it's not just that finding genetic relatives is difficult, it's also difficult to find unrelated donors who match. The following graphic of bone marrow donors by race accompanied an NPR story, Blacks Face Bone Marrow Donor Shortage:

The article goes on to say,  "In 2008, 40 percent of caucasians who didn't have a bone marrow match in their own family were able to receive a transplant through the national marrow donor program. The rate for African-Americans was 15 percent."  According to the Asian American Donor Program, "Ethnic Minorities have a 30-40% chance of finding a match from the existing NMDP registry. Caucasians have an 80% chance of finding a match from the existing NMDP registry."

According to the NPR article, the low rate of donation in the African-American community is one reason for the low match rates.  But there's also another reason: "Experts say that African-American patients have more rare genetic makeups than caucasians because their genes tend to be more racially mixed. This makes finding a precise match that much tougher." 

It strikes me that this racial mixing in America would make it difficult for recent immigrants to America to find a match in America.  They are less likely to have genes that are racially mixed.  No wonder that homeland searches are more productive for international adoptees like Kailee and Brian, who found unrelated donors. The U.S. national registry has cooperative agreements with donor registries in a number of foreign countries, but they tend to be small.  Publicizing the need for a donor can encourage donation in those countries, which is why adoptive families go to the home country looking for a donor.

When you adopt internationally, every story like Katie's, Lydia's, Deena's, Kailee's, Zak's, and Brian's  strikes a chord of fear. When you have no information about birth family, no way to contact them, you have to worry about what would happen if your child needed a transplant. It's impossible not to personalize the story and feel overwhelming sympathy and terror.  Add in the difficulty of an unrelated match because your child is an ethnic minority and the fear is amplified.

So what to do?  Register with the National Bone Marrow Registry.  Encourage your child to do the same when he or she reaches adulthood. Support the Asian American Donor Program. Support the right of all adoptees to original birth certificates and other information about their pasts. And look for your child's birth family.

1 comment:

Yogesh Raj said...

Thanks for providing this information was of great help for my needs Keep posting content related to bone marrow transplant in India