Adoptee Health Issues?

Question

When I go to the Doctor or Hospital I am asked for extensive family medical History. The American Adoption System tells me I am not entitled to know anything about myself or my own birth, including my family medical background

When I get upset about this situation I am told over and over (I've recently had a particularly nasty email from someone here on Y/A) that I am "feeling sorry for myself"

What do you think? Is it ok for anyone to be kept in the dark about their own selves?

Answer 1

No.  Any and all information about adoptees should be made available to adoptees.

I believe that should include a genetic family tree if possible, a comprehensive history of health on both the maternal and paternal sides including any genetic pre-dispositions, and contact details of the birth parents should the adoptee wish to reunite.  Along of course with an original birth certificate.  

All of this info should be made available to parents who adopt, and should be able to be accessed by the adoptee at any time.

What did your email have to do with it?

Answer 2

There is a difference between wanting medical information and wanting the names and addresses of your genetic donors.  Actualy, I suppose that wanting both of them is perfectly natural.  It's ok to want to know everything.  

However, I don't think that it's right to violate confidentiality agreements with biological mothers.  Some of them really want nothing to do with the child after it is born.  They want to forget anything every happened.  If we don't allow them a legal option for remaining anonymous then we will either have more abortions or more "baby moses" abandonments - or even worse, children found in dumpsters!  

I think what needs to be created is a medical record depository.  A biological mother should be able to choose to remain anonymous so long as she provides complete medical records at the time of adoption, and updates them on a periodic schedule.  

I know some adoptees are hurt by not getting to know all of their roots.  I hate to say it, but it's just the breaks.  In the past people used to leave children they couldn't raise out in the elements to die.  Was that any better?  In some societies infanticide is considered equivilant to abortion.  Is that better?  Maybe you think so, but of course if that's really true then all you would have to do was jump off a cliff and all your problems would be solved.  Personally, I don't think that infanticide is better than adoption with a questionable history.  I agree with you that it's a pretty cruddy way to start life - but it's not the worst.  Other children are born sick, or paralysed, or handicapped for life.  That's not fair to THEM either.  You're a product of your situation, and sometimes in life you just have to deal with what comes your way.

Answer 3

Yeah im in the same boat!

I just tell them the truth I dont know nothing! haha

It doesn't bother me to terriblly though.

I dont think that your feeling sorry for yourself though.

No one knows what its like being adopted unless you have experienced it your self.

Dont worry about what people say on y/a, people are stupid  all over the place. No one should make you feel bad for wanting to know answers about your self and your background

Answer 4

Aren't most adoptions "open" now?  I assume you were adopted under a closed adoption, but I do think that the movement toward open adoption IS a step toward improving the system.  My daughter is adopted from another country that only does closed adoptions.  I have no information about her birth parents' medical history other than the mother's height, weight, and age at the time of delivery.  I wish I knew more about it, and I'm sure it will be inconvenient for her when she's older.  I think it's good for you to be upset if you're going to do something construtive with your anger - like working toward more open adoptions or something...but honestly why get upset over something you can' t change?  At this point you can't change it, so maybe you should just focus on what you can change and deal with your situation for what it is.

Answer 5

That is one thing i feel that should be open to adoptees if they won't let us have our orginal birth certificate.

Answer 6

no it is not right to be kept in the dark. i was for years and that is horrible. but then again my real parents didn't want me i feel like and they did me a favor. i know this for sure and hey why be in the dark? you need to know what medical and then you can see or what you have to look nearer. its different. take care.

Answer 7

Feeling sorry for yourself?!?!?!   How could you possibly be feeling sorry for yourself when all you want is to know your medical history?!

Every person has a right to their medical history.  This is why I am fighting so hard to get my son's medical information to his bio sister who was also adopted thru foster care.

Good luck to you in your fight!

Answer 8

When I was (much) younger, I didn't mind writing "adopted" across the medical history page in a doctors office.  Saved me time!  

At 19, a PAP test indicated that I had pre-cancerous cells.  My docs asked me if my 'mother' had taken DES while pregnant with me.  I didn't know. My parents didn't know.   For the next year I underwent exams, tests, biopsies, surgery.  It was a threat my future fertility.  Fortunately, we made it through, the docs and I.  If not somewhat blindly.   BTW - I was taken away from my birth mom at 15 months of age.  

I felt bad as a new mom when I could not give my daughter her family medical history.  The urgency of needing medical information hit it's peak the day I rode to the hospital in an ambulance, sirens blaring, with my son in the back. He had a seizure so severe that it required medical intervention to stop.  He was hospitalized for 4 days.  He was only 8 months old.  And I couldn't answer the doctors when they asked if I had a family history of seizure disorders.  

By that time, I had met my birth mother, but not my birth father.  I had his information.  I contacted him, asking for my medical history.  Now I can give our medical history not only to my children, but to my grandchildren.  

Those who argue or criticize do so out of their own ignorance.   We do our best to share our experiences.  If they can't or won't understand, well, then they just don't get it!  And probably never will.

ADD: And for those who had medical histories provided at the time a child was relinquished, the information provided is only UP TO that date.  Medical information continues to accumulate AFTER adoption.  My birth mom had uterine cancer AFTER I was relinquished.  My 1/2 sister had similar PAP results and medical issues as I did when SHE was 19.  I don't worry myself to death over these things.  I am vigilant, however, and pay attention to my health.

Answer 9

it is never ok to be kept in the dark about such important information as this. I am sure birth mothers would WANT thier child to know if there is anything serious in their families medical history. I think even if the system does not give out the information to the adopted person themselves the person should be able to place a request for their doctor to get this information even if names are not included, just you know information cancer is in the history, mental illness is in the history, genetic disorders are in the history etc. It is vital for some of this and the very least is for the doctor to know what is in the patients background to be able to best serve the patient.

Answer 10

Absolutely NOT. How can anyone keep someone in the dark about their Medical History? If there are significant medical issues in their birth family, and the adoption agency knows, then it is your right to know about this IMO.

Suppose your birth mom, her sister and their mom all had breast cancer....you'd have a significantly higher chance of getting it...BUT without knowing this your doctor would not be checking you out earlier (outside of breast exams) than the standard.

Suppose one of your parents had something called Huntington's Chorea.....that means you would have about a 50/50 chance of getting that when you were older (as early as mid-thirties). If you at least knew you had the chance you could get tested and KNOW and PREPARE for it. (it's a really scary genetic disease that attacks the brain and basically turns a person into a blubbering vegetable who may need to be institutionalized.)

It's ridiculous that the American Adoption System should even have the belief that you can't know anything about your medical history....it is so vital to your own personal health. I can understand that the birth family's identifies need to be kept private...but health issues should always be known. (even if it's vague....like breast cancer runs in your family...)

Answer 11

I know just how you feel.  I also feel angry about the fact that I don't know anything about my family medical history, and have experienced that awkward, uncomfortable moment in a doctor's office when I have to say I'm adopted so I know nothing about my family history.  

Adoptees absolutely have the right to their own history.  We're treated like second class citizens and told we should just be happy we're alive.  We're not given the most basic information about ourselves, and we're supposed to go around acting like it doesn't matter to us.  Non-adoptees have no idea how awful this feels, and how disrespectful it it to us as human beings to insist that we just be we're grateful for being alive.  No one else is told this kind of bulls**t!  Why are adoptees treated like somehow this stuff shouldn't matter to us?!  Why don't we have rights?!!  

Whew.

Answer 12

I do not think it's OK for adoptees, or their adoptive parents, to be kept in the dark about their medical history.  That could be given at the time of adoption without revealing anything that could lead to the discovery of the birth parents identity.  I'd dearly love to have our adopted daughters medical history!

Answer 13

The medical history is the only part that concerns me about being adopted.  To my knowledge, I don't have allergies to anything and don't have any glaring health issues.  The main thing I worry about is the future - for instance, I have no idea if I'm predisposed to having breast cancer.  But, like my husband said, if you knew, what would you do?  You'd most likely worry yourself silly over it which isn't the way to live your life.  I completely understand your frustration and fear.  I don't agree that medical records should be kept sealed.  We certainly have a right to know as much medical information as we need to to ensure our own future.

Answer 14

This is one of the (many) things that are wrong about how adoption is practiced in the US.

I lost a friend to breast cancer in her twenties, because her doctor wouldn't schedule a mammogram, because she had no family history of breast cancer.  She had no family history, period.  She was adopted.  She had no access to her records, even though her FATHER(adoptive) sat on the board of the adoption agency she was placed through!

I had trouble with several doctors before I found my mom, and was able to have a partial history.

I fired a pediatrician because he wouldn't even LOOK at my son's medical history, because he was adopted.  I had to bring his mother in and have HER sign a hippa form. (at the time, she lived three states away!)

We still do not have a complete medical history for him, as the father refused to have anything to do with the process.

We need to have some sort of system that REQUIRES families who place children to provide an updated medical history every time there is a major change, or every five years, with penalties if they do not.  It MUST be retroactive for EVERY adoptee.

It can go along with the laws that give teeth to open adoption agreements.

These, and all adoption laws, need to be standardized on a FEDERAL level, and need to include open records, medical histories, open adoptions with teeth, protections from coercion, and licensing of foster, adoptive, and biological parents.

Answer 15

I have suffered from debilitating migraines since I was about 14 or 15.  I have spent literally thousands of dollars on tests, MRI's, blood work, you name it, they have done it, to try to find out what is causing my headaches.  

Would having my medical history have helped me?  Oh most definitely; upon reunion I found out that my (now deceased) n-father also was a migraine sufferer.  These aren't typical migraines; they are a hereditary condition and now my SEVEN year old son is starting to get headaches.  SEVEN YEARS OLD.  But knowing now what it is, we FINALLY have found the treatment that will work.  But it took me finding them to get the information; I couldn't even get a judge to open the records because of this medical condition.

Good thing that I was able to reunite and find out what is going on; otherwise, my poor son would be suffering just as I was.  

So, it not only affects the adoptee, but our potential children as well.  The implications are very far reaching.

Answer 16

OK i do think that people have the right to know their health history. I have a friend who just did a private adoption.  She has medical records for the mom and history of everyone up until the time of the adoption.  It is not an open adoption and the birth mom lives 9 or 10 states a way and does not want to be contacted.  She gave the child up at birth and did not want to see the adoptive parents.  the documents were given through the nurses.  

In a case like this doesn't  the birth mother also have rights.  She does not want to be contacted for anything further and the adoptive parents only have her first name and age.  I think there should be away for the files to be updated with the birth parent being able to remain anouymous because so many things are inherited and they adoptive child has the right to know

Answer 17

I'm sorry someone saw fit to email you an insult.  People who say such rude things must find it very difficult to imagine themselves in your shoes--which makes a little sense, because not having access to your own medical records really is an aberration.  

I'm upset too.  I know it could be worse, but (f'rinstance) having a mammogram every year when other women my age have them every two years unless there's a history of breast cancer in their family makes me a feel a bit picked on.  So does having to write UNKNOWN across entire pages of questions I really ought to know the answers to.  

It's also very frustrating to have a doctor ask, "What do you mean you don't know?"  "I'm adopted," I say.  End of conversation.  Oh well.  Family medical histories are very important, but I can't have mine.  Too bad for me.  As far as I can tell, nobody who doesn't have to deal with this directly cares in the least.  That may be the thing I find most upsetting of all.

Answer 18

that's insane!

if the information is available, then i find it irresponsible and unfair that we hide behind policy and legislature to avoid giving people their medical information.

here's a scenario:

today i had to have a nuchal translucency ultrasound and some other blood work due to my age (i'm 36 ). during the genetic counseling, i was asked about 50-thousand questions about my parents' and parents'-in-law health and potential genetic abnormalities.  even i (a non-adoptee) had to make a couple of phone calls to get the information.  

i could NOT imagine an adoptee without access to that history undergoing that battery of questions.  it's too much, people.  we are not "protecting" adoptive children from harmful information...we are denying ADULTS access to their biological medical information.

Answer 19

I do think adoptees should have their medical information. Today I think the birthparents should willing give any medical information they have or know to the adoption agency to give to the adoptive parents.  That’s what I would do if I ever put a child up for adoption I would make a copy of any medical information I had on myself to give to the parents.

Answer 20

I think it is incredibly irresponsible for "the system" to prevent free access to medical information/history.  I further think that it is beyond irresponsible for b-parents to provide false or misleading information!  (my case)  

It is insane to say that you are "feeling sorry for yourself" because you would like to know your medical history!  I have had countless doctors explain to me (as if I needed to be convinced!) how important medical history can be, especially for certain illnesses/conditions.

Answer 21

No, I don't think it's right. Everyone deserves the right to to their biological history.

Answer 22

this is the reason so many answerers are titled as angry or mean. they truly arent they are just advocates of reform. there needs to be a reform done on the whole system.

i recently went thrugh a problem with my son, he had some medical issues the doctor felt may be genetic, how scary is that? when i told him i didnt know he gave me this odd look. like i was stupid. as i explained my story he understood and asked if there was any way to get the info.

i ended up finding my biofather, which was great, but i also got some long awaited answers.

we should be entitled to that info. it could be a matter of life or death. it is unfair for them to withhold that from us. hopefully over time things will change and at bare minimum we will have access to your medical history.

Answer 23

I think you are entitled to medical information and when I went through the Children's Home Society  back in 1972, we filled out questionnaires detailing our family's medical history and what we looked like, our ages, education etc. When I finally met my daughter, she had this info, so I'm wondering why (as you all are) adoptees do not know their medical history. When we gave her up, we were assured that she would never be able to find us and that we could never find her, we were told this was best for everyone. I'm glad that adoptees are speaking out, but a few years ago this would have scared the stuffing out of me, because my daughter was big secret and I didn't want people to know what I had done. It was selfish of me. You aren't feeling sorry for yourself. You do have the right to know your medical history.

Answer 24

I think that when it comes to medical issues, they should definately be disclosed to an adoptee, or the adoptive parents, if known. I can understand a birthparent who desires privacy, however, I also firmly believe that the laws need to change, and change soon.

Some states are making efforts now to enforce new laws for adoptees who have closed adoptions, to open their records when they are 18.  I think this is a great thing.

My story is one where I am fortunate to have met my daughter's birth mother through our agency. I have some medical information on her side, not her birth father's however, and that does worry me some, however, I try not to stress about it too much.

My hope is that I will be able to furnish as much information to my daughter that I can, and that if she desires, she may meet her birth mother one day and develope a relationship, (if that is what she wants).  I have to remember that I am second in this situation. My daughter is first, and always will be.

So, the answer to your question is, yes, I do think that you should be entitled to your medical history, unfortunately, until our system "gets with it", it may take a while. I wish you luck, and for the people that say you are "feeling sorry for yourself", shame on them, Ignorance is such a pitiful thing! Educate yourselves people!