January 19th, 2011
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479746_58732023My father is in the hospital today for a heart issue.  They just wheeled him into the catheter lab to perform an angiogram. He was in the same hospital 10 years ago for a triple by-pass. After his surgery, my brother and I both made an appointment to see a cardiologist to see if the same issue flowed through our veins.  I shared a cardiologist with my father, and as I walked on the treadmill for my stress test, they were comparing my results to Daddy’s. It was comforting to know we shared the same DNA, but not the same defective heart.

When I adopted Elle from Russia, her medical history was sketchy.  Her medical file consisted of a single page document with her date of birth and immunization records.  At the bottom of the page was a diagnosis.  It wasn’t that Elle was sick, and she had no physical special needs, but to be eligible for international adoption, she had to have something wrong with her.

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Her medical file was in Russian.  The Cyrillic letters meant nothing to me, but stapled to her file was an English translation. Under diagnosis, it said she had perinatal encephalopathy.  That sounded really scary.  I had Elle’s records reviewed by a pediatrician who specialized in international adoption. When I had a phone consult with the doctor, I was told the diagnosis could be related to the slightly enlarged size of Elle’s head and could be indicative of brain damage.  Something in my gut told me not to listen to the doctor.  Good thing I didn’t.

I am not advocating that adopting parents should ignore the Russian diagnosis as frivolous or automatically incorrect.  The medical records should be treated with respect, and the files should be reviewed.  Adopting internationally is a leap of faith, but it should be an informed and calculated leap of faith.

But as I sit in the hospital waiting room, I wonder about Elle’s medical history. Does she have a history of heart disease in her family?  Does her birth mother’s family have breast cancer?  Does her birth father’s family have a history of diabetes?  Every time I take Elle to a new doctor and I am faced with filling out a family history form, I have to leave it blank.  It doesn’t matter that both her grandfathers have had heart surgery.  It doesn’t matter that I’ve had breast cancer.  None of our family’s medical history influences her medical history.

I suppose the leap of faith I took 12 years ago will have to continue to carry us through for the rest of her life.  I pray I will never have to sit in a waiting room as she is wheeled down the hall.  I also pray modern medicine continues to make leaps and bounds.  Most days I never think about her medical black hole. It’s just on the very rare occasion I have to sit in a hospital waiting room that I am reminded of all the things I don’t know.

Photo Credit.

2 Responses to “The Medical Black Hole”

  1. khruza says:

    I am just beginning the adoption process. A woman told me some very disturbing news today and I’d like to learn about other peoples’ experience with this medical black hole. Specifically, she said that all children available for adoption from Russia have development delays and are on the spectrum for Fetal Alcohol Syndrome. She said that the Russians will lie about the birthmothers alcohol consumption. Her friend and everyone she has met in her Russian Adoption network now have children with FAE or FAS. IS THIS TRUE????

  2. Lanita M says:

    Not necessarily. My daughter does not have FAS, but that is why it is important to make sure any referral you receive is reviewed by a pediatrician that specializes in international adoption. There is a lot they can tell by pictures and video. There is no guarantee in any child, adopted or not, but believing such a blanket statement would be unwise. The best thing you can do is speak with your adoption agency about your concerns.

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