Monday, February 4, 2013

Having no Medical History is Serious for Adoptees


 The overwhelming majority of the non-adopted have an extensive family medical history that they take for granted.  For example, many of the medical issues are well-known in the family such as Grandma's diabetes and great grandpa's heart condition.  They know their blood brothers, sisters, aunts, uncles, etc. and if they don't know personnally, somebody in the family knows the diseases, conditions and illnesses that each family member has or has experienced or has died from.

When a child is placed for adoption, their life is put in danger if a complete medical history is not ascertained by the social workers or attorneys handling the adoption. The right questions need to be asked of both sides of the birth families and documented.

My medical history consisted of this:

 "All family members were in good health as could be ascertained from the record."

HUH?

Later in the file, the social worker admits that my father did not know about my conception, so there was obviously no investigation into my father's medical background.

However, my birth mother lived in one of the agency's maternity homes.  There was plenty of time to gather information about her medical history.  The agency failed to do this for me.

My birth mother was born with a hole in her heart and she had to have an extremely  rare surgery when she was 5 years old.  This information never made it in my file and/or was relayed to my parents.

In fact, no medical information at all was relayed to my parents, putting me (and them) at an extreme disadvantage every time I went to the doctor, hospital, when I carried my son, and even to this day.



I have been fortunate with my health; however ever since the death of Comedian Gilda Radnor in 1989 of ovarian cancer, I have had  a very strong fear of ovarian cancer.  I asked my doctor about getting a CA125 test but he didn't recommend that . . . too many false positives.  I had good reason to fear this disease:

" the single greatest ovarian cancer risk factor is a family history of the disease."

www.cancer.gov


 My doctor and I decided to stay on top my pap smears and I began getting my mammograms at an early age since I did not know if my mother, sister, aunt or grandmother ever had breast or ovarian cancer. 

I have tried to always be on top of any perceived health conditions, but I still worry that there is diabetes, heart and stroke on my father's side.   When I finally got a little bit of health history from my birth mother at age 40, I almost didn't believe it.  I was so used to knowing absolutely nothing about my health history, it didn't feel real to actually hear it.  My doctor was quite shocked to get this information after all these years.

Adoptee Steve Jobs died of pancreatic cancer.  I found a writing about his condition, that is sometimes hereditary:

Question:


Steve Jobs was adopted and may not have known his family medical history. How important is family history in determining one's risk for pancreatic cancer? Does it have a genetic component?



Anitra Talley :


Few risk factors for developing pancreatic cancer are defined. Family history of the disease is one risk factor.  Approximately ten percent of pancreatic cancer cases are hereditary.  There are family registries and early detection studies for people who have a family history of the disease.  http://live.washingtonpost.com/pancreatic-cancer.html

The family registries and studies won't help Steve (sadly), but they can at least be helpful to his children, along with Steve's medical history (since Steve had later in life received knowledge of both of his birth parents.)

One of my fellow Lost Daughters, Susan Perry, was diagnosed with Melanoma, a very serious skin cancer.  She has this to say:

        " When I had malignant melanoma over 10 years ago, I was a candidate for a medical study at U. of Penn following my surgery. When they found out I had no medical history, they had no interest in including me."

Learning of this incensed me.  Exclusion due to adoption status. Sadly, this is nothing new for many of us, but when we are talking about a life and death situation, it  is so unacceptable and wrong, that this alone should be reason to NEVER have a closed adoption.

All parties of an adoption should know each other's names, addresses and phone numbers so when an adopted child comes down with unexplained symptoms and/or there is a genetic disease in the family, the adoptive family and medical professionals can be prepared and ready to deal with this condition with all the facts and best information.  

I understand this is the best case scenario and it doesn't always pan out this way, but let's not purposely leave a child in a medical abyss like so many adoptees are raised in.

It could literally change the outcome of your child's (or their children's) life span.












13 comments:

  1. This is such an important topic Lynn. Thanks for taking it on.

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  2. I really enjoyed your post ! I have two adopted children and realise the difficulties of not knowing family history , if the foster carers hadn't advised us of what childhood illnesses and injections it would have been ablank page . They are now back in touch with birth family so problem isa little easier.

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    1. That is great to hear, Fiona! Thank you.

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  3. Great post thanks for sharing. This is something that I too as an adoptee have always struggled with. I hope that open adoptions will help the next generation of adoptees have access to their medical information.

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    1. Thanks, Andy! I too hope the next generation will never have to experience what we did.

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    2. I could care less about the next generation I want things fair for me

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  4. Thank you so much for speaking to this very important topic!! People need to hear this.

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  5. Hi Lynn Grubb Thank you for your nice comment.I am really enjoyed your post.Thank you very much for the information provide! I was looking for this data for a long time, Radiation badgebut I was not able to find the trusted source.

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  6. I have a lot of aches and pains and I am adopted and I really don't know whats wrong with me and I don't really know how to fix it I know its because dipshit non adoptees have dneid me of my health history so I cant find out what my health history is this makes me so mad I am in aloyt of pain not haing my health history and nbody even cares

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  7. Steve Jobs went on an all fruit diet for a while, which could certainly cause problems with the pancreas.

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