Family Health History Updates and Adoption

01 May

I read an adoption agency post on Family Health History, left a comment, went back to read it again and realized the post is from 2016.  My comment is still there pending approval, which I expected as I commented on the weekend.  The post was on what the adoption agency does with any family medical updates, note what they do seems pretty standard across agencies, something I’ve talked about before.  Adoption agencies can also charge an adoptee to pull their file.

Is the standard good enough is the question I’m asking you my friends.

If you answer in the comments:

  1. Include your role in adoption (first parent, adoptive parent, adoptee).
  2. Answer whether it is good enough to you, and why, if it’s not good enough, what should be done instead.
  3. Include whether you’d have known to check with the adoption agency regularly for updated family health history.

Here is the post: Adoptees and Updated Medical Information

My comment is below, but please don’t click the ‘Read the rest of this entry’ until you’ve read the above post linked, so it’s read without my bias good or bad.  If you are going to comment, it would also be good to do that before you read my comment.

“The form is then given to the adoptee should they inquire and have an interest in receiving this information.”

So, it can be life-saving info for the adoptee, yet, you just file it away, available for an adoptee if they ask you for it, even though they don’t know you have it.

But you don’t know if they (the adoptee) knows it may be available to them if they just asked for it. You don’t know if the adoptive parents knew a birth parent could update a file, or that the onus was on them to check in with you every how often.

I think the adoption agency (all of them) have a responsibility to reach out to either the adult adoptee, or if still a minor, to the adoptive parents when the medical information is updated. At least try to make contact and document that you tried.


Posted by on May 1, 2017 in Adoption, adoptive parents


Tags: , , , , , , ,

20 responses to “Family Health History Updates and Adoption

  1. Lara/Trace

    May 1, 2017 at 4:46 pm

    Hey Tao, as an adoptee, this smells too late – way after the fact. Adoptees were not considered when placing them with strangers in my era (late 50s). I can tell you I know adoptees who have had serious medical conditions but no one knew anything. We will never know how many died as a result of this. I can only guess adoption agencies are trying to “make good.” Too little too late.


    • TAO

      May 1, 2017 at 4:49 pm

      True, I had a multi-generation FHH waiting for me, but I wasn’t adopted through an agency, my family also assumed I knew who they were…

      What should they do with updates?

      Liked by 1 person

      • Lara/Trace

        May 2, 2017 at 11:39 pm

        I know no adoptee who has had any success with updates on their health – which is disturbing. If an agency does play this, it will help, but the agency has to be open about this policy.


  2. Tiffany

    May 1, 2017 at 5:07 pm

    I do not think open adoption is some magic solution that makes everything all perfect, but this is one benefit. I am working to get my daughter who is adopted some intervention for a minor developmental issue (not adoption related), and when the form had a question on medical history, I sent off a quick email to her mom to ask. I received some enlightening info from her, and although this is a minor issue, it is representative of the benefit of me (and eventually our daughter) having direct contact with the natural family.

    I have never favored these solutions where the agency is an intermediary between families because it is so flawed. This sounds like a terrible solution for all the reasons you mentioned, and it’s even worse to me that they write it based on the premise that many adoptive and first parents do not even know this form exists. Isn’t that in itself very, very troubling?

    Liked by 1 person

    • TAO

      May 1, 2017 at 6:06 pm

      Exactly – the first problem is not even knowing it exists or to ask for it, the second is not telling an update was received. Open changes things for sure.

      Liked by 1 person

    • Tiffany

      May 3, 2017 at 5:35 pm

      I feel I need to clarify something I said… my daughter does have contact now with her parents, but I made it sound like she doesn’t. I meant she doesn’t currently contact them with questions on her medical history. 🙂

      I am really angry for adoptees who don’t get their medical history and that our society doesn’t view this as a human right. I was thinking more about this last night and getting very angry as I thought about it. Do you listen to the podcast Adoptees On? Haley recently interviewed an adoptee who did not know he was adopted until later adulthood. His parents intentionally kept it from him. One of my first thoughts (and this was mentioned in the interview) was that he had unknowingly been giving doctors his incorrect medical history for years! That is appallingly negligent to me, on the parents’ side. That is a potential life and death altering piece of information- to know that you do not know your medical background, so doctors shouldn’t make assumptions and you need further testing. He was even a completely different racial background that he had thought, and again, some diseases are tied more closely to race. It’s just beyond infuriating for me to think about… the levels of wrongness in this one are multiple and far-reaching.

      Liked by 1 person

      • TAO

        May 3, 2017 at 6:23 pm

        Thanks Tiffany – you’re right, the lack of family health history is the reason why I became vocal. It’s wrong and compounded still today by adoption agencies who can’t be bothered to push hard and educate. Sometimes I think that once all the checks have been cashed, we are irrelevant…

        Liked by 1 person

      • TAO

        May 3, 2017 at 6:24 pm

        Most people don’t see the value in a Family Health History…until it’s what makes all the difference between being healthy, or not. I can’t tell you how many AP’s who have just dismissed the concern as not a big deal…


        • Gregory Luce

          May 4, 2017 at 4:09 pm

          It’s funny. I always felt a tad defiant and special when asked about my medical history and I could just answer, “don’t know.” Like I was special, kinda mysterious. The doctors or nurses were almost always nonchalant about it too, with less boxes to check, a line that can be drawn across the whole page.

          But then I got older. And health things pop up. And it would be fair to know what we’re up against. Or what our kids are up against. It’s pretty simple really.

          I’m not holding my breath for agencies to pitch in. Their interest in us essentially ceased once the final decree was entered. And the fees to get basic information are ridiculous, even a fee to look at the file. Ugh.


          • Gregory Luce

            May 4, 2017 at 4:16 pm

            And, slightly unrelated, congrats on being named one of 2016’s Best Adoptee Blogs of the Year. Well deserved:

            Liked by 1 person

            • TAO

              May 4, 2017 at 4:20 pm

              Thanks Gregory – I was surprised as I thought I kept a low profile.


          • TAO

            May 4, 2017 at 4:19 pm

            I can understand why you’d feel that way as a child. I never did as dad was a doctor and took phone calls 24/7 and the most often question he’d ask after listening – does X run in your family…


  3. Cindy

    May 2, 2017 at 2:26 am

    I had no idea that information could be updated until I found adoption blogs on the internet. By that time my child was a 25 year old adult. When I did attempt to update on 2 occasions I was stonewalled by the social workers. Avoided by the person I was told I “needed to see to do that”. (they were in the office when a woman in another building called over there and whoops, suddenly “she’s home sick today” when I got there.) No call made by said person in the following days. On both occasions not given the forums they had for updating because I “needed to see so and so do do that”. The mental and physical energy it took to make those attempts and then to be stonewalled was sufficient to stop me in my tracks. It took months to rebound after each attempt. Thankfully being found circumvented all their silly games and asinine rules.

    The refusal to work with me to update information I do NOT understand. I couldn’t help but think that they were trying their hardest to deny, deny, deny an adoption ever happened or that a child that WAS my flesh and blood existed.

    After all wasn’t the adoptee “born to” the adoptive parents and no further contact needed ever about anything for the adoptive family? A sort of don’t call us we won’t call you. It’s your baby and we’ll never remind you of adoption again.

    What is a person supposed to think? When something this important for the adoptee /adoptive family to know, is prevented /stonewalled, it boggles the mind and leaves multiple questions unanswered. God only knows how often these things happen/ed, so even if you find no med. update or other info in your file… please don’t think your mother, father or family didn’t try.

    Liked by 1 person

    • TAO

      May 2, 2017 at 3:12 am

      I’m sorry Cindy and thank you at the same time.

      Liked by 1 person

  4. Pj

    May 2, 2017 at 9:20 pm

    I’m an adoptee, no it’s not good enough and no,I wouldn’t have known ! My agency /org needs to list on their w-site/ social media available resources and contacts for adult adoptees. Nothing is listed, you have to call and hopefully get directed to the appropriate person . It’s almost as if they don’t want you to know ! Rant over 🙂

    Liked by 1 person

    • TAO

      May 2, 2017 at 9:34 pm

      What I though Pj – I’m sorry. Hopefully, if we keep talking they will learn to do better.

      Liked by 1 person

    • beth62

      May 3, 2017 at 1:43 pm

      I agree Pj. They made me work for most information, and pay…and wait. It was far more than a click or a phone call away. I’ve never found a place to click. Well, I did, but the link wouldn’t work.
      Getting lost in a phone system that hopes you give up.
      Getting different answers from different people on how to get held information, what information is held and/or updated, or who the right person to contact is, in hopes that you give up.
      Getting the run around can be very discouraging, the ony thing I found to combat this discouragement was severely angry tenacious determination.

      I think making it difficult in hopes we give up is often on purpose – for different reasons.
      My determination was constantly tested. I suppose to determine how much I wanted it, on someone’s moral scale. Feel like I constantly have to prove how much I care, about myself, to others. So many people are annoyed by the Adoptees that want more infomation. We are supposed to shut up and go along with everything, forever, that’s our job.
      Another reason is – there is no profit from me getting information. I’m wasting the paid workers time. Costing the owner’s business money, or costing the taxpayers.

      Reminds me of my time spent working in a parts department. We were told not to waste more than 2 minutes on people searching for the correct $2 gasket to repair their carburetor, sell them a new $200 carburetor instead, or a $100 rebuild kit. Unless you want to be paid $2/hour. And… Stop being so helpful and kind to these gasket people, then they might get a clue that the reason we are in business here is to make a profit.


      • Pj

        May 4, 2017 at 10:42 am

        Beth62-I had to go to the CEO of the (people) parts dept. Told him his service people needed to be trained and processes evaluated. Felt like I wanted to blow a gasket !


  5. L4R

    May 10, 2017 at 6:27 pm

    No, it is not good enough. Back when I was born, there were health issues in my b-family that were not reported to my a-family. In my twenties, I learned that I could contact the agency to see if any new information had arisen, but it cost money. IT COST MONEY for me to have the privilege of finding out IF there was any new health information added to my file.

    Moreover, my father was not involved with the adoption, so they didn’t even try to get my paternal family’s info.

    We know more about the family health histories of pedigree dogs than we do about most adoptees.

    I think every decade or so, b-family should be required to update the family health information and new information should be given to the adoptee (adoptee’s family if still minor). Will it happen? Probably not. We’re more like mutts left to fend for ourselves.



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