Medical & Genetic History
When we chose open adoption to have Baby MPB, we realized that we would not get detailed family medical history for our child. We hoped we’d get some, but there is no guarantees about the level of detail or the accuracy. In fact, in the open adoption world where we live, it’s pretty well known that the information we receive can often have gaps and/or be inaccurate. All we get is a basic self-report on information that is known by the birth parents and ultrasound reports if there are any.
(In Baby MPB’s case, I believe we have pretty good medical history and as we are in touch with his birth mom we have the ability to ask more questions if we ever need to. And I’m absolutely grateful for that. But we don’t have everything and there always will be gaps – as I’ve discussed before we aren’t even positive what his racial make-up is).
So, when we contemplate embryo adoption, having the opportunity to find out more reliable details about family medical history and genetics is something we had never considered. This seems to be a trend these days, and it just one more thing for us to think about.
And, honestly knowing intimate details just isn’t something we really care too much about. We already know that our friends are healthy and they have healthy children, what more do we need to know? I guess we also know that their children are some of the cutest and most adorable little kids ever – that’s just a bonus information in our minds!
In a perfect world, I really do want any child we have to know their biological family medical history. Mr. MPB and I don’t care about it, but I suspect once grown a child/adult may want access to this type of information. I also want our children to know their biological families, if possible (more on that another day).
But do Mr. MPB and I need to know more details? I don’t really think so.
At this point in time we haven’t asked our friends any questions related to medical/genetic history, so I honestly don’t know anything. But, I am rather confident they would be willing to share their known family medical history if we asked today or in the future.
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Science is stronger than ever! One genetic test and you get your answers to everything about racial makeup. I wouldnt sweat a lot, id be more interested in mental illness, diabetes etc. that stuff is more important .
To put a spin, G doesnt have his upper lateral incisors and apparently thats heriditary. Both my husband and everyone in my near family has them, so who knows which forefather didnt have them! No one knows their history that deep, so even if you think you know, perhaps we dont.
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Ya, we’ve decided not to do any genetic testing right now on baby MPB, rather we will wait until he wants to know and then we’ll do it so he can learn with us. It just isn’t something that we feel the need to do right now. 😊
And I agree with you about what info is more important to know. But even then it’s really not something we’d factor into our decision at this point, but would be more about useful information to know as the baby grew up. If that makes sense. 😊
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Totally agree.
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I agree, mental health (only concerns would be serious mental illness…. I think most of us have minor mental stuff going on) and things to watch for like cancer history, diabetes, heart defects. I’d just like to know what types of things doctors would want to know in a general medical history questionnaire. And, with genomics becoming a likely standard reality in the next 10-20 years, you’ll be able to find these things out later, well in advance of when most diseases take hold. We live in a different, better scientific world, thank goodness!
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Waiting until you need it can come back to haunt you, whether it’s too late to get the info because people passed away, or you needed to know it before and now it’s too late. Far better to be proactive and stay proactive in updating as new events happen. And, no, not everyone will be harmed by not knowing their FHH, some will.
Genetic tests – that would be swell if only they knew all the genes that cause all the different diseases, what triggers a gene to turn on or off. Science isn’t there yet, and won’t be there for a long time as it is always dependent on funding and access to a large enough contingent of patients willing to be studied, and those patients (at least in my case) needed to also be able to provide a FHH showing a history of events like mine.
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I’m not sure that this would be a huge issue for me. Everyone has genetic propensities based on family history that they may not be aware of, for a variety of reasons, even if they are born into and remain with their biological family of origin.
As one example, my husband is an only child born to two parents who were both only children. While my husband obviously knows what genetically linked health conditions his parents have had, having no aunts or uncles, he has only small sampling of the possible genes he could have inherited and passed on to his children. (Many genetic conditions come from a combination of recessive genes that could be carried by both his parents without his ever knowing it.)
Also, short of serious, life-threatening conditions or those that cause disability, even if you knew about genetic predispositions, what could you do about them? In the case of diabetes and heart disease, for example, the only “treatment” would be maintaining a healthy lifestyle: not smoking, exercising regularly, eating healthful foods. These are all things that you’d likely counsel your child to do whether or not you knew that the child had a genetic predisposition to develop these conditions.
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I think there is a big difference between how adoptees feel about medical history and how non-adoptees feel. If you’re not adopted you don’t have that thing of not having immediate access to your parents/family and being able to ask those questions, and/or living with the people to be able to see what their health problems might be.
I’m on a bunch of adoption discussion groups and this comes up time and time again. As TAO said, waiting to find out can come back to haunt you. For adoptees, they probably won’t be interested in that information as children but they often tend to get more interested in medical history / genetic heritage when they’re adults.
For me it’s two different things. Firstly, medical history. Some might say why would you want to know? But I think if you know you have a family medical history of heart attacks or cancer or alcoholism there are certain lifestyle changes you might make. If you carry recessive genes for an inherited disease it would be better to know rather than have children who will suffer. That information is generally missing for adoptees, but you said you do have a limited medical history and are in touch with baby’s birth parent(s) so I’m guessing you can get that.
Genetic history is another thing. So for non adoptees it’s really a novelty, for people who are into genealogy and whatnot. For adoptees it is a much more significant thing… It is telling them where they come from, who their people are. It’s giving them the chance as adults to find blood relatives. I think even in an open adoption that kind of information can be missing.
For both types of information it’s something that adult adoptees often want but given the later development of technology, have to fund themselves. From my point of view it’s the minimum that adoptive parents should do to try and maintain their child’s data and heritage. There is nothing threatening about it… It doesn’t affect how they feel about their adoptive family or anything like that. It’s just giving them a small piece of their identity, a piece of the jigsaw puzzle. That way they’ll grow up knowing they have access to that information, their information, whenever they’re ready for it and chances won’t be lost if the trail goes cold.
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Just an additional thought to the whole proactive aspect…
I talked to my doctor about being adopted, no history, she promised to assume I had everything in my FHH. And, maybe she did hold up her promise in that regards. What I didn’t know then, that I know now is that having a FHH of something gives you access you won’t have if you don’t have a FHH of it in the larger medical community. Early age screening for breast cancer, must have a FHH of early age breast cancer, things like that. High risk for heart disease puts you in the front of the pack, having high cholesterol, high BP, other lifestyle risk factors – they all put you ahead of the pack when it comes to priority cases. So, no FHH, minimal or no lifestyle factors but have symptoms, you’re at the end of the line.
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Knowing birth family medical history can be a double edged sword. While it’s nice to fill in the gaps, sometimes it makes you question things you maybe wouldn’t, and shouldn’t. Not knowing allows “ignorance is bliss.” Sometimes I’m glad I have info, other times I wish I didnt. And I know I don’t have it all. It’s so complicated!!
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