Eu-Gene

Because I’m a project coordinator, I get to help the project managers with some of the things they’re working on. One in particular is working on revising the coverage manual, since Yale has its own private HMO. There are certain issues that arise, and claims doesn’t know how to handle these cases, so we are working to revise the criteria so there are clear rules on what Yale will or will not cover. It goes without saying that I’m doing all the research for these issues. I check Aetna, Cigna, Anthem, Harvard Pilgrim, and a few other insurance companies, compare policies and come up with recommendations for Yale. Not too bad, and I get to use engineering graph paper. Win? You’d think so. However, I’m now up to “genetic testing” and “genetic counseling,” which has got me thinking about things. 

Generally, insurance companies will only cover the costs of genetic testing and counseling if there are family histories, either parent is a carrier of a recessive/dominant chromosomal abnormality, either parent is part of an ethnic group that is known to be at higher risk for a genetic disease (ie, Ashenkazi Jews and Tay-Sach’s). There is NO coverage of the expensive tests “for informational purposes.” Of course, there’s an incomplete list of about 75 different genetic diseases to test for, and because some had names I had never heard of, I figured I should look them up. BIG mistake. HUGE. 

Genetic diseases can’t be cured. Managed, yes, but not cured. Some nearly guarantee death by an early age. Others sneak up on you when you’re in your 50’s. Some even result in what could be considered torture: sound mind but completely incapacitated, extreme pain, or severely disfigured.

I started to get worried about my children. Yes, they’re 4-5 years off, and yes they’re probably already screwed because PJ’s family has strong histories of cancer and heart disease/high cholesterol. But at least we know that. I don’t know if my birth parents were exposed to heavy metals, were carriers of the twins gene, had any sort of family history of cancer, diabetes, mental retardation, blood disorders, genes that result in physical mutations….nothing.

I suppose this is one of the perils of adoption. You just don’t know. It’s really nerve wracking and I hate it. Sure, I’m healthy and try to take good care of myself. Sure, I don’t exhibit symptoms of any sort of a disorder. However, it doesn’t mean that I’m not a carrier of something really horrible. I don’t want to be responsible for bringing a child into the world, and having him/her suffer their whole (albeit possibly short) lives. For example, anencephaly was the highest occurring neurological defect in Korean populations (though most pregnancies diagnosed with this are terminated now). I’m not posting a picture of this because it’s pretty gruesome, and very sad.

I don’t want it to be my fault that my child has Downs Syndrome, or Kleinfelter’s, or Huntington’s…I don’t want to have to explain to the neighborhood kids that making fun of my daughter’s polydactily (also common in Korean society) is not nice, and it’s not her fault. 

And perhaps this is a bit selfish of me, but I used to work with people with mental retardation and developmental diabilities. I saw what parents, family, and friends had to go through. It’s a full time job trying to raise children with a genetic disorder, and I don’t want that. I want to have the canonical family life; I don’t want to have to go to special class, or quit my job to make sure they are under full time supervision, or go bankrupt paying for said supervision. 

I started to have a panic attack at work yesterday. My best friend (who can trace her lineage back to some random nobility in the 1600’s, and does not want children) told me I’m being ridiculous, need to chill out, and there’s no point in worrying about all of this. My unni, who is also adopted, says she worries too. It just put an extremely bad taste in my mouth, that there are so many disorders out there, that I can’t, and insurance companies won’t, help…

It’s the not knowing that scares me.

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