How much should we know?

Care Partner of Adult
March 14, 2022 in IBD

As IBDLyfe is a safe space to voice ideas that may be sensitive, I pose to my community some thoughts and questions that are merely that – ideas to ponder.

My daughter is engaged to be married, which has this mother imagining my daughter’s eventual future as a mother herself. She has two grandparents, a father, and a brother with UC, along with a slew of other auto-immune diseases including autism spectrum disorder and substance abuse.

How much of this should anyone consider when choosing a mate and/or deciding to have children? How much of this can we consider, meaning, how much access do we have nowadays to genetic awareness of which genes we carry and which we do not?

As a Jew, I was tested for the dreaded Tay-Sachs gene, which is considered a commonplace and expected test for Jewish people to take before family planning. Similarly, women with a family history of breast cancer can test for that gene, but I have not done enough research to know if we can find out which auto-immune chromosomes we have inherited. And if we can find out this information, what do we do with it?

I am well-versed enough to understand that just because we carry a gene for an auto-immune disease does not necessarily mean we will express it. Usually, an environmental “insult” has to occur for that gene to activate, and there are many who have debated over recent years what exactly those insults may be.

A part of me thinks it could be beneficial to map our genes so we can do everything possible not to set off the expression of the “dangerous” genes. However, I understand that even knowing such information would not be a guarantee of preventing it from coming to life. And being sensitive to the fears of eugenics practices, another part of me says that if we know what is in our hereditary makeup, isn’t it best to forget about testing and simply use all the tools in our toolbox to help prevent onset? (I’m referring to making our best judgments as to dietary habits and the like.) What advantage is there really to knowing our newborn child’s genetic makeup?

What do you all think? 

1 - 2 of 2 Replies

  • KatelynPatient

    This is one that I think will hit so hard for so many people in this community. As a mom, here's my take...

    I think it's worth acknowledging with a partner that there's a risk that any potential child may develop IBD. However, I think it's important for both people to keep in mind two things: 1) the risk isn't 100% and it's very, very possible that a child could never develop IBD, and 2) there are children who are born to parents without a history of IBD who then develop IBD anyway. (On that note, I'm the only one with IBD in my family. Nobody else has any other autoimmune conditions either, besides my dad who was only recently diagnosed with one that affects his lungs. So we don't have a history of it in my family, but I ended up with it anyway.)

    Looking at it from that angle, I decided that I couldn't let all of the "what ifs" hold me back from having a family of my own. Genes are funny things, and so is risk. Nothing in life is guaranteed, and I didn't want to prevent myself from having children just because of something that may or may not happen.

    The other thing that has put me at peace with my decision is the fact that if my daughter ever ends up with IBD, she will have a source right at home who can understand what she's going through and advocate for her. I like to think that if she begins to show any signs, I'll know that we need to test for it instead of waiting for it to get really, really bad. I think that could be a positive thing for her. Plus, I consider how I personally feel -- if my parents had known that I would end up with IBD, would I still have wanted to be born? The answer is an absolute yes.

    For what it's worth, I haven't done any sort of testing on my daughter to see if she has any of the genetic markers. We did some testing while I was pregnant for the typical things like Down Syndrome, Trisomy 13, and so on, but that was mostly so that we could be prepared for whatever might come immediately at birth. I don't want to know if she has the markers because, like you said, she might not ever end up with IBD even if she does have them. It's just not worth worrying about something that hasn't happened yet and might not ever happen. If we reach that point, we'll cross that bridge then. Until then, I'm going to enjoy every ounce of sweetness and silliness she brings into our lives.

    Also, congratulations to your daughter on her engagement! A very exciting thing for all of you! 😊

    March 15, 2022
  • Wendy_LExpert
    Care Partner of Adult

    So well said...all of it. This is why I value this community, because of people like you, Katelyn!

    March 15, 2022
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