Kris’ Corner – Navigating Unknown Family Medical History

June 23, 2022

Today I’d like to share a little bit of what I learned recently about helping children navigate unknown, or little known, medical history…. because they deserve to have access to any information they possibly can, and also how scary and frustrating it must be for them to NOT have access to such information. 

While recently attending a conference, I listened to not just one, but two sessions which brought this issue to the forefront of my mind…and I can say with all honesty, I had not considered it much up to that point. Now, that’s not to say I had not thought about it at all, but probably not as much as I should have.  

One session dealt specifically with genetic testing, both to find out answers to unknown or limited family medical history but also to search for birth parents/family (which is another topic for another time). Another session I attended discussed helping children navigate doctor appointments while having the potential “landmine/trigger” of having have an unknown or limited family medical history.  

Now, you might be wondering why I’m talking about this with foster kids, but there are several ways why a child in care might not know his family medical history. It’s not something that necessarily comes up in conversation, especially with little ones. And it might be, if the family has moved a lot or the child has not gone to the doctor often, those kinds of questions may never have been asked and/or the family has never taken the opportunity to record it for the child. Or maybe one doctor collected the information but records were never passed along to the next doctor. And it’s also quite possible that the birth parents don’t know the information themselves. 

So, the point in my post today is this: Find a pediatrician who can be at least somewhat trauma informed and sensitive in the questions they might ask about family history. Now, clearly if the child you are discussing is an infant, it’s not as imperative. But even toddlers are listening, even when we don’t think they are. So, if the provider does not know the child is in care, (or adopted) you can be very clear in the beginning of the initial appointment to test the waters with them to assess their reaction; by that, you should be able to discern how sensitive they will be with questions.  

And to be clear, I’m not just saying they should be sensitive only in questioning, but also in their responses. For instance, if a child is having migraines and the doctor asks, “How long have you had them, and what is their family history?” You can answer how long the child has had migraines. And then on the family history, you can say, “We don’t know.” or “We are unsure.”  

If the provider simply says, “OK” and moves on to the next question, they might not be as in tune or sensitive (read: compassionate) as a child might need. If they respond with, “Oh OK. That must be really difficult to not know some of your family history. How does that make you feel?” You can tell that they’re understanding that they need to “read the room” a little differently. Depending on the age of the child, the response could obviously vary. And the young child probably wouldn’t know how it makes him feel. And possibly an older child might feel triggered to some degree.  

But my point is that the physician is attuned to what the child might be feeling and acknowledges that; so in an on-going relationship with that doctor, the child might feel more comfortable because he actually feels seen and heard…and might be more likely to share concerns or ask questions in the future.  

I learned that genetic testing for a child in foster care is tricky without a family history because most of the time genetic tests are interpreted through the lens of family medical history. That means you have to know what’s happened in generations prior in order to tell what might happen to a specific individual. So, without that, it’s obviously difficult…dare I say impossible. 

Clearly, some things can be tested for without knowing the history…for instance, the marker for Huntington’s Disease. You can test, and know if the marker is there or if it is not. If it is, the individual will at some point develop the disease. If it’s not there, then he will not develop it. Case closed. 

Unfortunately, there are vastly more diseases which are “read” based on family history, which is why getting as much info as you can is important, if at all possible. 

An additional take away, at least for me, from the session on genetic testing is that before a child is adopted from care, a genetic test could potentially mean it’s more difficult to match them with a forever family.  

So, here’s what I mean: if it is a child in care has become legally free but does not have an adoptive family lined up, the overarching theory, at least according to the speaker I heard, is that genetic testing could possibly make it extremely difficult, if not virtually impossible, to match a child because of a diagnosis received via genetic testing.  

But I do want to add my two cents, from my personal perspective. I would advocate doing the testing before adoption because kids in care, most of the time, have Medicaid and it will cover the cost. There’s no guarantee that the adoptive family will receive Medicaid as part of the adoption negotiation package and the testing is thousands and thousands of dollars. When I told our developmental pediatrician that our son’s plan had changed to termination of parental rights and that we were going to adopt him, her first response was to have him tested for some things so we would at least know what we might be facing down the road.  

Obviously, she had no doubt in her mind that we were going to follow through with the adoption, regardless of what the testing told us, so in this instance it was beneficial to us on many levels. As soon as the adoption was finalized, we were able to begin the process to get a Medicaid Waiver for him (which is something I am planning to discuss in an upcoming post). Clearly, I am personally thankful for her advocacy to have him tested sooner rather than later so we could get services in place for him more quickly.  

The point here is that, depending on the case, it could be advocated beneficial or harmful, depending on the child and the point at which he is in the adoption process. 

I encourage foster and adoptive parents who have access to one or both biological parents, grandparents, siblings, aunts or uncles…anyone in the child’s biological family, to tap into those resource and ask, ask, ask for family medical history information! 

I know it can be difficult and can feel a little weird or invasive, but try to remember that you’re doing it FOR the child…not for your own personal knowledge. It is to help them so they have the information moving forward. Basic things to ask about include heart disease, lung disease, cancer, alcoholism, drug addiction, asthma, ulcers, hearing loss, vision loss, epilepsy, migraines…the list goes on…and, if you’re really feeling bold, ask which side of the family is it on, and who specifically has it. And even if you miss something (because more than likely you will!), that is really ok. The child will know that you made the best effort you could to collect the information on his behalf. 

And the final piece of this is to record it and store it in a safe place so when you, or the child, need it, you/he will have at least something to go by.   

I know this can be a difficult, and often complex, area to navigate with your child. But it’s better that the child has someone who can coach them along the way and help them unterstand they are not alone in their journey.