Filling one gap

The Boy filled out a medical form for the first time yesterday in preparation for an appointment with our new eye doctor.

It asked for his medical history. And I could see the wheels turning in his head, the realization that there was a gap in his knowledge of himself, a gap he may try to ignore, but which will follow him through life.

I felt completely helpless. There was nothing I could do but tell him gently that this was something he would face pretty frequently, and that the answers to the questions would have to be “unknown.” He, in typical teen guy fashion, put on the “who cares?” face and body language, but I know him well enough to know that it hit a nerve.

This is one of the things about today's adoption practices that drives me up the wall. How could gathering a family medical history (at least to the extent that it's known), and thereby reducing a child's medical risks, possibly be a threat to anyone’s privacy? And how can withholding this information from an adoptee be justified in terms of the "best interests of the child?"

Most of all, in light of current focus on adoption ethics and reform, why haven’t adoption practitioners moved to change current practices?

It seems to me that it would be an easy thing to correct. Intake social workers would simply collect a page or two of medical history. The questions on The Boy's form yesterday weren't rocket science, they were straightforward "check the box" things - are their instances of cancer, heart disease, arthritis and the like in your family? Nothing elaborate, but so important in the framework of my children's lives and identities.

Plugging this gap would be a start, and could fill one hole, eliminate one pain, for future adoptees. Someone tell me why this couldn’t start right now!

Comments

Mommavia said…
I completely agree. I didn't really realize the importance of a family medical history until I was diagnosed with cancer. As soon as I was I wanted to know if anyone else in the family had anything wrong with their thyroid. Turns out there was no family lin, but it was nice to be able to go back and find out. Knowing that you are at risk for high cholesterol or certain types of cancer (colon, prostate, breast, other hereditary cancers) could make a difference in how you eat and get screened.

It is likely that my son will never know his whole family medical history. We do know that his maternal grandmother died from cancer, but we were not told what type. When I read that on his referral, it didn't stop me from wanting him to join our family, or invaded anyone's privacy...it made me grateful we had one little piece of medical information.
Christina said…
I agree. My sisters both searched for their birthparents in hopes of learning medical history. (and succeeded) We have some medical history for Zeeb (our 4 year old adopted from VN) but unfortunately his birthmom could only answer in vague terms based more on symptoms than actual diseases so I don't know how helpful it will be for him. But at least our agency is trying to get that information. It's a start.
suz said…
Uh, dare I say I did complete this at 18 but it was never provided to the adoptive parents of my child? Also, what about as life changes? What I knew at 18 clearly changed drastically as years went by? Does a point in time medical history really help that much?
Margie said…
That's an excellent point, Suz. And I wonder how many other mothers have also provided that information, but it hasn't made it's way to the adoptee or to the a-parents.

In the case of Korean adoption, I don't believe a medical history is captured. If it is, I'm guessing it's part of the mother's evaluation, rather than for information that will go to the adoptee and his or her family. Unless there was a clear medical reason, I've never heard of a medical history appearing in a file.

You are right that the information would be sketchy. But it would fill in a little more of the gap. Even broad brush information would be something.

As I write this, I wonder if fear of disclosure, by mothers, but even more so by adoption agencies, is the root of the problem. It just seems so logical to me that this much information could be provided to our children, and it would be so easy to capture.

Hmmm. More thinking to do on this one, and a little research. More to follow!
Michelle said…
Medical history is just one of the many questions that adoptees aren't capable of answering. And you're right, Margie - it never ends. You just happened to be with P when this happened.

Just last month I got my eyes checked, and as expected, the doc asked me if there's a history of Glaucoma in my family. I took a deep breath and said, "I don't know . . . I was adopted." He wrote it down and said nothing.

I reunited with my mom in 1996 (she passed 8 momnths later), but after a 32 year separtion from my mother, I was trying to get a million questions answered, trying to get to know her and my found family, then, while dealing with the all the anger, happy and bizarre emotions that arrived after reunion, silly me, I forgot to ask about Glaucoma.

I can not express in a nice way how painful and horrific it has been not being able to answer questions abut myself, my identity, my ethnicity and my family's identity and history - all of it, not just the medical ionformation.

When you wrote about your P's "who cares" reaction, I can so relate...I know that exact feeling. It doesn't go away...

That's one reason I was angry at my mother when I found her - all the years of struggling with answers to thousands of questions, and my own inability to piece together my identity - having to convince myself that I didn't care, that it didn't matter, anyway - and that's because there was nothing I could have done about it - and I put all the responsibility and blame on her.
zoe said…
Agreeing with you, Margie.

Actually I feel like any information from a first parent (a personal statement, etc. or any shred of personal information) would be so wonderful. The way things were when your children were relinquished (and the way things are now) was and is completely unacceptable in my mind....but that seems to be my personal issue lately.

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