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Old 09-16-2012, 11:06 PM
 
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Moderator cut: I moved this from an existing thread as a place to discuss challenges and solutions around obtaining birth records or other documents.

Some medical conditions strike in childhood, some in young adulthood, and some in mid-life. And if you do't settle on these issues within yourself, the questionaires come at you with: any cancer in your mother's family? Did your mother, sisters, aunts have breast cancer? ...And yes, these are the questions. If you are angry that you don't want to know about your biology, and something happens to you or your children, then you can't answer these questions. How will you feel then? Then you might have to ask yourself, "I wonder if I do have siblings with..."

Last edited by JustJulia; 09-18-2012 at 04:11 PM..
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Old 09-17-2012, 09:01 PM
 
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Originally Posted by kaykee View Post
Again, I am not talking about feelings. How a person feels about NOT wanting to know has no bearing on the fact that a doctor may need to know the real facts of maternal and paternal lineage to trace a medical condition or may need to ask if any siblings have the conditon or may need to ask if any aunts, uncles or cousins have the condition. Knowing these facts can mean life or death decisions in an adoptee's health care.

And I am not talking about "an adopted child". I am an adult of 56 years and have to deal with these questions from my doctors.

As adoptive parents, many here may need to re-think how they look at the entire picture of adoption. Some medical conditions strike in childhood, some in young adulthood, and some in mid-life. And if you do't settle on these issues within yourself, the questionaires come at you with: any cancer in your mother's family? Did your mother, sisters, aunts have breast cancer? ...And yes, these are the questions. If you are angry that you don't want to know about your biology, and something happens to you or your children, then you can't answer these questions. How will you feel then? Then you might have to ask yourself, "I wonder if I do have siblings with..."
Whenever I get to the "Genetics/family history" page of medical forms, I just have whoever's helping me write "ADOPTED" across the whole page.

If I wanted to know my genetic history, I could get DNA testing.
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Old 09-18-2012, 05:23 AM
 
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Originally Posted by nimchimpsky View Post
Whenever I get to the "Genetics/family history" page of medical forms, I just have whoever's helping me write "ADOPTED" across the whole page.

If I wanted to know my genetic history, I could get DNA testing.
Writing "adopted" doesn't help doctors at all when it comes to health concerns... I had to do that for most of my life as well, when my sister finally contacted me I found out that there were many health concerns & I was actually lucky that she found me when she did as they begin to hit in late twenties/early thirties.

& not every adoptee can afford DNA testing.
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Old 09-18-2012, 07:20 AM
 
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Originally Posted by thethreefoldme View Post
Writing "adopted" doesn't help doctors at all when it comes to health concerns... I had to do that for most of my life as well, when my sister finally contacted me I found out that there were many health concerns & I was actually lucky that she found me when she did as they begin to hit in late twenties/early thirties.

& not every adoptee can afford DNA testing.
Obviously not, but what else should I do? My medical records from the Russian hospital (actually it was the USSR at the time) are complete bogus. They wrote down that I had medical conditions I don't have and failed to mentioned medical conditions that I do have. Even if I did use those documents to help doctors, it would just confuse them when they tested my liver for Hepatitis C and realized I definitely don't have it, contrary to what my Russian documentation claims. The reason for this is that Russia adopts healthy children into the country and unhealthy children out of the country, but at the same time the orphanage likes to downplay any real medical concerns, so what they end up doing is hiding anything that would really lessen the chance of the child being adopted (your child is blind, deaf, etc.) and make up diseases so the child can be adopted out of the country, but then inform the adoptive parents that the diseases are just made up (while still not mentioning any real concerns). And as a result, my parents put me through all kinds of medical testing to make sure I didn't have Hepatitis C and whatever else they claimed I had, and didn't know I was legally blind till I was 12. Not everyone can afford DNA testing, including me, but if I really want to know my true genetics, it's the only option I have. I know I'm not alone in this. For example, a friend of my parents' adopted a boy from Russia and only found out after about a year he had been here that he's deaf. If an orphanage won't even tell the parents about a significant vision or hearing loss, then how can they possibly be trusted to have a reliable genetic history? Are medical records from other countries or from within the U.S. more trustworthy, or are they just as questionable?
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Old 09-18-2012, 07:41 AM
 
1,879 posts, read 1,862,122 times
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Originally Posted by nimchimpsky View Post
Obviously not, but what else should I do? My medical records from the Russian hospital (actually it was the USSR at the time) are complete bogus. They wrote down that I had medical conditions I don't have and failed to mentioned medical conditions that I do have. Even if I did use those documents to help doctors, it would just confuse them when they tested my liver for Hepatitis C and realized I definitely don't have it, contrary to what my Russian documentation claims. The reason for this is that Russia adopts healthy children into the country and unhealthy children out of the country, but at the same time the orphanage likes to downplay any real medical concerns, so what they end up doing is hiding anything that would really lessen the chance of the child being adopted (your child is blind, deaf, etc.) and make up diseases so the child can be adopted out of the country, but then inform the adoptive parents that the diseases are just made up (while still not mentioning any real concerns). And as a result, my parents put me through all kinds of medical testing to make sure I didn't have Hepatitis C and whatever else they claimed I had, and didn't know I was legally blind till I was 12. Not everyone can afford DNA testing, including me, but if I really want to know my true genetics, it's the only option I have.
((((Nimchimpsky))))

I'm sorry to hear how terribly the Russian orphanage handled that situation.

I think what thethreeofus is trying to point out is that if it is possible for there to be ongoing history, then it is worth having that option available. A closed/confidential adoption means there is no hope of knowing more unless they make contact in later years. Having at least semi-open with exchange of information is the very least that I think should be available if possible - obviously that isn't always possible.

My brother has cancer and it is one that is hereditary. He is in touch with his brelatives and so they will know to get themselves tested - it is one that involves a certain test every year. With my own situation, my bfamily has a very strong history of heart disease. When I googled her name and found out she had passed away suddenly at a young age, I knew that it was important to find out why and it was an important factor to consider when weighing up whether I should contact my other bfamily members.
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Old 09-18-2012, 08:42 AM
 
10,452 posts, read 10,627,661 times
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Originally Posted by susankate View Post
((((Nimchimpsky))))

I'm sorry to hear how terribly the Russian orphanage handled that situation.

I think what thethreeofus is trying to point out is that if it is possible for there to be ongoing history, then it is worth having that option available. A closed/confidential adoption means there is no hope of knowing more unless they make contact in later years. Having at least semi-open with exchange of information is the very least that I think should be available if possible - obviously that isn't always possible.

My brother has cancer and it is one that is hereditary. He is in touch with his brelatives and so they will know to get themselves tested - it is one that involves a certain test every year. With my own situation, my bfamily has a very strong history of heart disease. When I googled her name and found out she had passed away suddenly at a young age, I knew that it was important to find out why and it was an important factor to consider when weighing up whether I should contact my other bfamily members.
Sure, I can understand that. If medical history is reliable and helpful, then I say go for it. I guess I have just lost trust for the system overall cause it's proven to be so untrustworthy. I'm glad it's helped your brother, though. I do admit that a part of me lives in fear that I might be predisposed to heart disease, cancer, Huntington's disease, etc. and just not even know to check for it because I have no idea. I just doubt that being in touch with my birth family would help at all.
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Old 09-20-2012, 10:28 AM
 
116 posts, read 85,440 times
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Quote:
Originally Posted by nimchimpsky View Post
Obviously not, but what else should I do? My medical records from the Russian hospital (actually it was the USSR at the time) are complete bogus. They wrote down that I had medical conditions I don't have and failed to mentioned medical conditions that I do have. Even if I did use those documents to help doctors, it would just confuse them when they tested my liver for Hepatitis C and realized I definitely don't have it, contrary to what my Russian documentation claims. The reason for this is that Russia adopts healthy children into the country and unhealthy children out of the country, but at the same time the orphanage likes to downplay any real medical concerns, so what they end up doing is hiding anything that would really lessen the chance of the child being adopted (your child is blind, deaf, etc.) and make up diseases so the child can be adopted out of the country, but then inform the adoptive parents that the diseases are just made up (while still not mentioning any real concerns). And as a result, my parents put me through all kinds of medical testing to make sure I didn't have Hepatitis C and whatever else they claimed I had, and didn't know I was legally blind till I was 12. Not everyone can afford DNA testing, including me, but if I really want to know my true genetics, it's the only option I have. I know I'm not alone in this. For example, a friend of my parents' adopted a boy from Russia and only found out after about a year he had been here that he's deaf. If an orphanage won't even tell the parents about a significant vision or hearing loss, then how can they possibly be trusted to have a reliable genetic history? Are medical records from other countries or from within the U.S. more trustworthy, or are they just as questionable?
I wasn't adopted out of an orphanage, nor was I an Intercountry adoptee. I am a USA domestic born and adopted.

But even with the "openness" (no such thing in 1956-57) of my adoption, wrong information was passed to my adopting parents. They were told that my mother died of uterine cancer. So, this became an issue when I started puberty. My Mom had emotionally problems and worried excessively that an "internal exam" wouldbe traumatizing to me. I was a strange kid. I took things as they came. If the dentist drilled excessively, I had nothing to compare the experience, so I didn't know that I had deep, and too many cavities. I just did what I was told to do. And, as for internal exams and PAP tests, I did that, too, at a young age because I was told it was needed. I ddin't question anything.

Until I was 18 and when my siblings found me. One sister had ovarian cysts at a young age. The others didn't talk about health, and our father certainly was old school and didn't mention anything. That was in 1974. Our father gave me our mother's death certificate which listed her cause of death. It was remarkably different than what info was told to my adoptive parents. So I went through tests that were inapropriate for me and caused undo worry.

Unfortunately, I don't know why our father didn't share the same info, or even our mother's death certificate, with the other siblings. They argued with me for many years, saying that I was lying about Mother's cause of death. Even when I showed them her death certificate, they argued for the sake of arguing.

It became painfully clear that cancer ran rapid in our mother's line. Relatives died at early ages. Scarry. So I told my doctors to be aware. SInce I can't be certain, either, my doctors watch closely and test regularly. They haven't suggested DNA tests.

Oh, one thing that really bothered me. As a child, I couldn't see. So I sat verey close to the TV set, held books up close to my face, and couldn't read the blackboard. By the time my parents took me for an eye exam, they were pretty upset and angry with me, saying I caused my own eyes to go bad because I was sitting too close to the TV... Well, my Mom got a big surprise when she was told my nearsightedness was severe and was inherited. She backed down from that very quickly, especially when the doctor asked me (he was speaking to me at age 7) in front of Mom: "Do you understand that this is serious? Do you understand that you must wear these glasses every day for the rest of your life? Do you understand that there is nothing you did to cause this? Do you understand that your eyes will get progressively worse as you age and that there might be other complications?"

That was perhaps the exact moment that Mom realized that I was separate from her. Though my parents did what they could for me, my health history was unknown.

So incomplete or falsified info from orphanages is a problem, just as incomplete health info from domestic adoptions. Adoptees often don't have a choice.
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Old 09-20-2012, 01:47 PM
 
10,452 posts, read 10,627,661 times
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Originally Posted by kaykee View Post
I wasn't adopted out of an orphanage, nor was I an Intercountry adoptee. I am a USA domestic born and adopted.

But even with the "openness" (no such thing in 1956-57) of my adoption, wrong information was passed to my adopting parents. They were told that my mother died of uterine cancer. So, this became an issue when I started puberty. My Mom had emotionally problems and worried excessively that an "internal exam" wouldbe traumatizing to me. I was a strange kid. I took things as they came. If the dentist drilled excessively, I had nothing to compare the experience, so I didn't know that I had deep, and too many cavities. I just did what I was told to do. And, as for internal exams and PAP tests, I did that, too, at a young age because I was told it was needed. I ddin't question anything.

Until I was 18 and when my siblings found me. One sister had ovarian cysts at a young age. The others didn't talk about health, and our father certainly was old school and didn't mention anything. That was in 1974. Our father gave me our mother's death certificate which listed her cause of death. It was remarkably different than what info was told to my adoptive parents. So I went through tests that were inapropriate for me and caused undo worry.

Unfortunately, I don't know why our father didn't share the same info, or even our mother's death certificate, with the other siblings. They argued with me for many years, saying that I was lying about Mother's cause of death. Even when I showed them her death certificate, they argued for the sake of arguing.

It became painfully clear that cancer ran rapid in our mother's line. Relatives died at early ages. Scarry. So I told my doctors to be aware. SInce I can't be certain, either, my doctors watch closely and test regularly. They haven't suggested DNA tests.

Oh, one thing that really bothered me. As a child, I couldn't see. So I sat verey close to the TV set, held books up close to my face, and couldn't read the blackboard. By the time my parents took me for an eye exam, they were pretty upset and angry with me, saying I caused my own eyes to go bad because I was sitting too close to the TV... Well, my Mom got a big surprise when she was told my nearsightedness was severe and was inherited. She backed down from that very quickly, especially when the doctor asked me (he was speaking to me at age 7) in front of Mom: "Do you understand that this is serious? Do you understand that you must wear these glasses every day for the rest of your life? Do you understand that there is nothing you did to cause this? Do you understand that your eyes will get progressively worse as you age and that there might be other complications?"

That was perhaps the exact moment that Mom realized that I was separate from her. Though my parents did what they could for me, my health history was unknown.

So incomplete or falsified info from orphanages is a problem, just as incomplete health info from domestic adoptions. Adoptees often don't have a choice.
I'm sorry to hear about your family hiding the history of uterine cancer. I hope that it doesn't down to you and am glad that at least now you know so you can be proactive.

Right, I can certainly relate and didn't mean to imply it's unique to international adoptees. I can definitely understand the pain of having a medical condition ignored for a long time. I was molested every day for a year as punishment by a teacher because I wouldn't look him in the eye when I spoke to him...cause I couldn't see people's faces, let alone make eye contact. I didn't even realize people had faces. I had no frame of reference so I didn't realize I was legally blind. I just believed teachers when they called me stupid and lazy, and assumed I must be stupid and lazy because everyone seems to be in on something that I don't get. To put it mildly, not having an accurate medical history can really wreck havoc on a child emotionally. I can definitely say that every child, adopted or biological, internationally- or domestically-adopted, whatever, it doesn't matter, has a right to accurate medical information.
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Old 09-20-2012, 03:26 PM
 
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Originally Posted by nimchimpsky View Post
I'm sorry to hear about your family hiding the history of uterine cancer. I hope that it doesn't down to you and am glad that at least now you know so you can be proactive.

Right, I can certainly relate and didn't mean to imply it's unique to international adoptees. I can definitely understand the pain of having a medical condition ignored for a long time. I was molested every day for a year as punishment by a teacher because I wouldn't look him in the eye when I spoke to him...cause I couldn't see people's faces, let alone make eye contact. I didn't even realize people had faces. I had no frame of reference so I didn't realize I was legally blind. I just believed teachers when they called me stupid and lazy, and assumed I must be stupid and lazy because everyone seems to be in on something that I don't get. To put it mildly, not having an accurate medical history can really wreck havoc on a child emotionally. I can definitely say that every child, adopted or biological, internationally- or domestically-adopted, whatever, it doesn't matter, has a right to accurate medical information.
Nim, I am so sorry! That is just awful and horrible! I agree with you! When I was adopted , it was common practice to hide any medical problems to make the children more "marketable". You would think with so much emphasis on health care today, this issue would be resolved.
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Old 09-21-2012, 03:03 PM
 
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A detailed family medical history does matter. Writing "Adopted" across a form doesn't help doctors one whit. Getting DNA testing is expensive and may or may not detect everything that needs to be known at a particular moment.

I was born with a blood disorder called hereditary spherocytosis. Basically it's a malformation of the red blood cells. It can be more or less serious, depending on the individual. My original mother gave it to me. Because I was left at the hospital and had no family around, the agency didn't really know what it meant for me. I spent six weeks in the neonatal intensive care unit, while the neonatologists figured out how I'd stabilize. At worst, I would have needed blood transfusions. At best, I could have gone home earlier, but I had no home to go to. I was given heavy sedatives to keep me from crying because I had no caregiver and the RNs were busy. I slept through the night by the time I was a month old. By the time the agency figured out I was "adoptable," I was six weeks old and went to foster care. I spent four weeks there. My parents were chosen because they were in their 30's and had good health care coverage. (This was the late 60's.) But they didn't know anything about how anyone in my family dealt with the spherocytosis; usually it means having your spleen out at one age or another.

I kept my spleen and never saw a hematologist, which was weird. I should always have had one. Oh well.

I was not tested for any other coagulation issues, which a hematologist would have done, knowing I had HS. I was fortunate not to clot during my two pregnancies, because it turns out that I have a hereditary clotting disorder, Factor V Leiden. Would have been nice to know. I should never have been on oral contraceptives. I should have been on anticoagulants during my pregnancies. I should have been on anticoagulants after my splenectomy. Because I wasn't, I nearly died, several times over from blood clots to my liver and lungs. While I don't feel grateful to be adopted, I do feel grateful there was a guiding hand that prevented my deaths those times.

I did not know that I had a deep family history of autoimmune disease; that my grandfather had myasthenia gravis, my uncle had MS, my cousin had lupus. All before the age of 50. My grandfather died of complications from Type II Diabetes. Also good to know. I must say that I was angry after I met my half-brother, who is a physician, and found out that he was lazy about giving me medical history. He even had a serious history of clotting. But that's another story...

I know now. My MDs are glad to know. I am glad not to have to write "Adopted, Don't know" anymore. Problem is, I still don't know who my father is, and may never know, so I only really have only half a history.

And moreover, I am glad to know all this for my sons. They need to know this; they are precious to me. They deserve more than blanks on a piece of paper. I cannot just shrug it off, saying it doesn't matter. They matter.
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