November 26, 2010

When Family Can Save Your Life

On the one hand, I tend not to emphasize the medical history aspect of open adoption. The relationships open adoption brings into my children's lives are about so much more than information. I'm loathe to see their connections to their first families reduced to sources of medical facts in anyone's minds. And I've seen adoptive parents so focused on information that once they have a few vague pages of medical history to file away and have maybe met the first parents, they don't see any reason to embrace openness after placement. (Which is really short-sighted even from an information standpoint, since a medical history changes over a person's life. I know the info I put on a medical form now in my mid-30s looks much different that what I put at 25 or 17.)

On the other hand, the access to family medical history that open adoption affords is invaluable. Being cut off from that information (and from potential transplant donors) has had devastating, even deadly, consequences for people in closed adoptions.

It's underscored in this story about Madison Tully, a teen from Louisiana--placed for adoption as an infant--whose life was saved by a bone marrow transplant from her biological sister. The sisters didn't grow up knowing one another, but there was enough openness in the adoption that Madison's adoptive parents were able to contact her birth family when she developed a terrible combination of diseases.
Madison was one of only 12 people in the world known to have both [lupus and sickle cell anemia], and the doctors determined that the only possible cure was a transplant that would replace her bone marrow. Bone marrow transplants had been done for people with sickle cell and people with lupus, but never for someone who had both diseases...
And there was a problem. Finding a match would be almost impossible because of Madison’s mixed black, white and Hispanic heritage.
Because of the open adoption, though, the Tullys knew that Madison had a sister. When the girls were little, they had even gotten together a few times. [Madison's adoptive mother] called [Madison's sister] Jasmin’s mother and asked if Jasmin could be tested as a possible donor.
“I didn’t even have to think about it,” Jasmin said. “I would do anything for Madison.”
Imagine if Madison's adoption had been closed. Because her adoptive parents were uncomfortable with open adoption. Or because the agency was stuck in the idea that placing parents just need to move on with life and adoptees need to be protected from scary birth parents. Or yet another excuse people use to take any form of openness off of the table.

Eddie and Mari are affected by both sides of the medical history issue. Because we know all four of their first parents, we know about some hereditary risks. That knowledge--and the wisdom of the family members with first-hand experience--could potentially make a big difference in diagnoses and treatment should they ever become ill. But because both of their first moms grew up in closed adoptions, there are also some enormous gaps that may never be filled in. The important knowledge we do have makes those gaps seem even bigger sometimes.

3 comments:

Andi-bo-bandi said...

Awesome post, H. I have thought about this at times since we know our children's first moms but not dads. We know little more than our daughter's dads first name and not even that much about our sons. I pray we never need to know for the reasons in this story but I do long to know who they are for my children's sakes. XOXO

Jess said...

Amen to this.

susiebook said...

This year alone, my dad got cancer (treatable and treated, thank God) and I found out that I have a relative who died of Alzheimer's---I can't agree more.

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