Dealing with no medical "history?" - For All?

Question

For those who are adopted children or were in foster care or do not know your past, or do not know the past of your adopted children, how do you deal with "medical history" questions and not knowing?

Do you feel upset not knowing if heart disease or cancer or ??? is part of your bio-family? Or do you not care?

Answer 1

Medical history is very important and that's only becoming more prevelant as time goes on.  We do have some medical history on our children (international adoption) but a good number of the unknowns is due to the lack of medical care in their country of birth.

I don't know if there is a history of heart disease or cancer not only due to adoption, but because in Liberia, these conditions would probably go undiagnosed and untreated.  

After bringing the children to America, we ran the gambit of bloodwork testing, but even so, those "Unknowns" stick out!

ETA: I certainly don't substitute my own medical history on my children's forms!  I mark "Adoption/Unknown".

Answer 2

For my son, I just say he's adopted and I do not know his medical history, except that... (and I list the things I do know).  

Like an answerer in another question mentioned, there is a test a person can take that is 100% what each person's genetic/hereditary make up is and it shows that kind of stuff  you're worried about.  So, if it were that important to you, you should do it.  

Otherwise, I know to keep my son healthy and continue to get regular check-ups from his doctor.

Answer 3

I am adopted and I think it's hard to handle sometimes. I tend to like to tell "most likely assume the worst but hope for the best" answer. Dr tend to get more irritated the older I get and are always pushing me to make sure I am taking all necessary precaustions.

Heart disease and cancers are getting more and more common and it is a little scary not knowing whether or not you are "High Risk" for these things.

What are some answers to tell drs when they ask?

Answer 4

Before I knew who my birth family was, it was very difficult. my adoptive mum and I would be sitting there and I would have a problem and need medication. For some medication you need to be asked if there is any heart disease for instance in the family. And I would always look blank and say "i dont know" and my mum would then explain to them I was adopted and even talk about her medical history as if it had something to do with me.

I was scared all the time actually paranoid. Omg what if I have cancer in my genes, I might be needing checks all the time and so on. Cancer was the biggest one for me because my adoptive dad has a lot of cancer in his history and he needs frequent checks and has had cancer that he has recovered from. I was actually terrified and even planned on a suicide procedure if I was ever diagnosed.

I then met my birth grandad and a couple of my aunts and my aunt told me about what medical issues there were in the family. They included, arthritis, knee replacements, minor strokes and mental health disorders such as schizophrenia and depression (my mother). I was sooo relieved there was no cancer!!! I was actually happy at the thought of dying of a stroke or getting a knee replacement because I almost felt proud about it, like ooo I might need a knee replacement like my grandad lol. Gotten over that a bit now but that's how excited I was at learning what there was in my family. Incidently I have had arthritis in my knees. I also have a couple of anxiety and mood disorders that have been linked to my history. I don't feel scared of the unknown anymore and I can now answer the doctor's "is there cancer in your family?" questions.

Answer 5

I'm not adopted and I still have incomplete information.  My mom had this weird disease and the doctors never figured out what it was.  It hangs over my head a little, but I get on with my life.  I think that's really the case for many people, adopted or not.  I care, but I take care of myself and try not to let it run my life.  I think that's also true for people who know that they have a genetic disease in their family like breast cancer or Alzheimer's.  All you can do it take care of yourself, watch out for symptoms, get regular medical checkups, and keep living.  That's true for everyone.

Answer 6

Although it's hard on a lot of kids to get their medical history, due to abandonement and being in the foster care system, in our state, it's the law to get the medical history from the bio-parents.  To do our son's adoption, we basically had lines (no names), just mother:  Mother's mother (and father), going up 4 generations, which included medical history such as any chronic illnesses, their type, cancer history, age and cause of death.  I felt it was very important, and my son's first parents very gladly gave me the information.  

If I didn't have the information, I'd simply put on the forms:  Adopted:  Unknown

Answer 7

Since my parents never told me I was adopted, I always filled out the forms with THEIR medical history.  I was being watched for gestational diabetes because my father and his brother weighed 16 and 11 lbs at birth.  My a-grandmother developed Type II diabetes later in life.

Now, I just make sure I write "N/A - Adopted" or "Unknown - Adopted" in large letters.  My doctor orders more tests for me because she'd rather be safe.  As I don't have any major health issues (that I know of), it hasn't been a big deal.  I feel sorry for those who do have health issues to worry about.

I would like to have the right to any death certificates (even if the names are redacted) for my biological family.  My maternal grandparents are very likely gone as they would be over 100 years old if they were still alive.

Answer 8

I am an adoptive parent.  I know more about one of my daughter's than the other, but I have no info on either father.  It is very difficult, especially when they have health problems.  When asked by a doctor I am always truthful and tell them that the child is adopted and that I have a somewhat brief medical history.  It is not as hard today as it was many years ago, with all the testing that's available if necessary we can kinda get around not knowing the history.

ETA:  Heather, since you brought up about testing, yes there are many different tests that can be done.  I NEVER suggested that not having medical background was okay, but it a part of life.  It is something we have to deal with.  I posted my answer just to let her know as a parent what I do.  I did not use this question as a platform to preach about the negative ways adoptees are treated.  Just because I do not go around tantruming about the injustices inflicted on the adopted child does not mean that I do not understand or care deeply about the situation.  It is coming to the point on this board that if you are not an angry adoptee fighting for justice than you should not have an opinion at all!

Answer 9

Yes, absolutely.  And try finding a Dr, or an insurance company that will give you basic tests early because of no medical history......

My best friend from high school died of breast cancer because her insurance company refused to pay for mammograms, because she wasn't 40 yet, and didn't have a "family history of breast cancer"  Of course she didn't have a history.. she was ADOPTED.

So am I, but I am lucky enough to have a Dr. who believes in testing early and often for things, BECAUSE I don't have a complete history.  (not to mention after what happened to Sue, I don't take "no" for an answer.)

Answer 10

Adoptees die because they don't have complete up-to-date medical history.

Nobody cares.  Even Judges who have the power to open the records for adoptees with life-threatening medical issues have refused to do so.

Sealed records and no medical history can kill.  For those who say it doesn't matter - why is medical history so important for them and not for their adoptee?  I wonder

What are all these tests?  does every adoptee have access to every test for the 145,000 potential genetic illnesses  out there, and would they be provided in any case

A simple bone marrow transplant from a sibling could have saved an (adopted) life that I treasured - a judge thought otherwise and let her die.

People just don't get it. I never will.

Have to deal with the cards we were dealt?  I wholeheartedly disagree.  Nobody should be dealt these blank cards.

Answer 11

We have very little medical information for my son. I know his grandparents are still living (way past average lifespan for his area) but need to be cared for full time (do not know if this is due to dementia, routine aging, etc). I know his mother died at age 29 shortly (within weeks) after giving birth to our son. I do not know from what, except that it was a slow, painful death and that my son also became very ill and almost died with her (they believe because she stopped producing milk that he was likely starving to death, no access to formula). According to WHO (World Health Organization) my sons region had only 1 doctor per 100,000 people and they were a few days walk from the hospital so she was never seen by a doctor. I know my sons father and 4 older siblings are considered very healthy.

Our adoption doctor was able to give us what we are told should be a fairly accurate assessment of the extent of the malnutrition our son suffered and the tests ran when he came home tell us a lot. He does suffer from one rare skin ailment and through research we were able to determine the origins of how he got that.

It does frustrate me not to have the information to give to him, particularly how/why his mother died. Thats really hard to not have those answers. I admit I am much more likely to get him to the Dr for any little thing than my bio kids. It does also worry me for when he is older. We do keep in contact with his family in Ethiopia so it may be possible to get more info should a situation arise where it was needed (unfortuantely we cannot get it pre-emptively, the rules are really strict about the family benefitting from putting their child up for adoption so we cannot provide them the medical care to get this info, except in extreme cases). But I do know of one situation where a child who came home was diagnosed with a genetic disorder that usually effects siblings and the adoptive family here was able to arrange to have all family back in Ethiopia checked to make sure they were ok.

Answer 12

I have to share that, not being an adopted person, I should (in theory) know my medical history.  I thought I did, in general...  until I've begun to have very odd things happen with my blood pressure.  I decided to bring the medical history form home and ask my parents to see if I could get more detailed information.  Mind you, both my parents are alived (still married) and only in their 40's.  They don't even agree on what I should put on the medical history form.  My maternal grandparents avoid doctors like the plague, and both my paternal grandparents are already dead - and my mom, dad, and aunt all remember different details about what medical conditions they had.  Ok - so I write off grandparent level....  I should still be able to know about my parents right?  After all, they're living and sitting right in front of me as I do this!  Aside from knowing my mom had thyroid cancer, there wasn't a SINGLE thing my parents agreed on.  They don't know if they've been diagnosed with anything!!!!  How can they not know, they go to doctors regularly, but they don't....  not really...  not for sure.  It's so frustrating!  At least, being adopted, you have a valid excuse for being unsure about things...  

Please don't ever be ashamed to tell a doctor that you "just don't know".  Worst case scenerio - they run more tests than absolutely necessary.  I know some doctors are unkind about it...  it took me ages to explain to my sons pediatrician that it is truly impossible for me to get answers about my sons paternal medical history because I can't get strait answers from his grandparents, and his father isn't around (though getting strait answers from him is even harder).  The absolute worst experience I ever had was when my (now ex) stepdaughter first came to live with me.  She was very ill, but none of the doctors in california had been able to diagnose her.  For some reason, her dad wasn't able to come to the doctors appointment, so it was me, all alone, with a child I'd met less than a month before who was obviously very sick.  (She was 2 years old, couldn't walk or talk, and shook constantly).  I put down, several times, on her admission paperwork that I was her STEP mother, that we knew virtually nothing about her biological mothers current whereabouts or any of that family medical history.  I also put down (multiple times) that the child had only come to live with me about a month previous, that the califiornia doctors had no diagnosis to give, and that I only had a short narrative that described her medical history to date, though I did have the name and address of her previous pediatrician from whom they could (presumably) get any medical records that were available.  Despite all this, when the doctor came into the room, she gave me the third degree.  Every time I had to say "I don't know" to a question, she sighed and sometimes practically sneared.  Finally she got to questions about the actual delivery.  When I told her that I "DID NOT KNOW" how long the labor had been, she finally asked me (in an exasperated tone) "how can you not know that?"...  I finally got fed up and said, "Look, I'm her STEPmother.  She was living with her grandparent for the last year, when she got sick.  Part of the reason we moved her here to Texas with us so quickly is because the doctors there weren't getting anywhere.  I'm SORRY that i don't know much, but I really did just get her, and I'm trying the best I can do do the right thing.  Can we please stop focussing on what WASN'T done in the past and figure out what we can do from here?"  Surprisingly, instead of being offended, the doctor actually calmed down and started thinking about tests and righting out referals to specialists who might help us.  

So please remember, you never have to be embarassed or ashamed of not knowing answers to questions.  It's the doctors job to help you FIND OUT what is wrong.  If you have to, just be blunt with the doctor about it.... and if the doctor still is being uncooperative, then just find a new one.  Sometimes doctors still feel like they have the right to be arrogant snots because they have the "power"...  but the good thing is that there are enough of them around these days that you can always just go somewhere else.  Shop around and find a doctor that you feel comfortable with, and that you feel confident will help ensure your health even without the, admittedly useful, information from a medical history.

Answer 13

All adoptes with closed records-funny how other people can just decide to "seal" the first chapter of our lives up-anyways...I think it it total c**p!  People who just don't understand where we are coming from on this always say "well now you just have to be extra careful about all health issues"-Well what if I can not afford-financially- to watch out and check for all issues?  I think since it is the state's decision to keep our info from us then they should have to pay for our medical bills that will rack up from being "extra careful"

Answer 14

Hi Looney Tunes,

Yes, i care.  I worry.  I am concerned all the above.

Simple things like food.  With any new foods I have an epipen and benadryl ready and waiting.  Same for bee stings.  I am way more apt to take my children thru adoption to the doctor over any little thing.  I am a FREAK when it comes to my children's health.  So yes i would say i am upset not knowing.

I have to admit that my feelings are probably exaggerated because our first daughter was stillborn.  So i completely get how fragile life is.

Answer 15

My oldest daughter was born in India and adopted from there.  We received NOTHING in the way of background (other then a document stating she was "the illegitimate child of an unwed mother")  and no medical info as well.  Nothing much we could do about it so we don't get upset over it.  We just play the cards we were dealt.

My youngest daughter was adopted domestically and we received a quite extensive package of info with some medical info however, as with most things, it is not complete and knowing the history of the bio mother I'd have to say the info is questionable.    

We'd like to have more but since it isn't there we just deal with it and move on.

Answer 16

I feel most upset about the birth record of my child being changed to mine and my husbands names. I feel that I am and will always be the mother of my child, but that I am a second mother...and he still has a first mother and father. I find it awful and frustrating that my child has very little information about his medical history along with the fact that we will most likely never be given access to his parents real names....so seeking out that medical history will be all but impossible.

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