Thoughtful Thursday: Duty to Warn
February 26, 2009
At last week’s Thoughtful Thursday, we considered our family trees and whether they might provide clues to our own infertility, loss, etc. Some people could trace broken branches throughout the tree, and some people found that they were the first “stump” (as Murgdan put it).
This query revealed another related issue: did we know all along, or did we only find out about the family history after revealing our own struggles? A few people received full disclosure, some people had heard vague information, and some people only discovered that they themselves were conceived through infertility treatments after struggling with their own infertility! Some people still have not received any information, and don’t know whether relatives are holding back or whether there is nothing to tell.
This then led some people to raise a different issue, which we’ll explore today: Do parents have a duty to tell children what they may have inherited as far as infertility or loss?
Many of us seem to wish we’d known more, earlier.
Ernessa already answered this week’s TT in last week’s comment:
This issue really burns me up, b/c I don’t think families realize how important it is to let their descendants know about their medical history.
This isn’t your dark secret that’s yours to keep and not talk about in my opinion. If you have a medical issue that might affect your children’s or grandchildren’s chances of having children, then you should TELL THEM EVERYTHING. I don’t understand why anyone thinks it’s okay to withhold this kind of information. It costs a lot of money and time to test for all of the stuff that might be leading to infertility.
Imagine what would happen if we could all walk into our first fertility appointment with both of our parents’ and grandparents’ medical records. In many cases, that would tell the doctor exactly where to look.
…our diagnosis is pretty straight-forward and contained to us. It isn’t inherited and it probably won’t affect our future children. However, if either of them ever have any fertility issues, here’s me promising to tell them EVERYTHING. I’ll even make them a copy of our fertility records if that will help.
Now having a daughter who’s 8 years old, it has made me think of what am I going to tell her when she gets older. I plan to be honest. I think this runs in the family. However, I don’t want her to make any rash decisions to run and try to have children early in life to try to circumvent it. I will advise her to go to college, find the right person (guy/girl – I don’t discriminate), have a career and then think about building a family. But be aware for certain signs of issues and be armed with the genetic facts of our family and know when it’s time to see the doctor for help.
If I have any girls, it will be so important for me to let them know about the family history. I don’t want them to get to the point of wanting to have children only to be blind sided by loss.
I guess I just hope that when we finally do make it, and have kiddos, that as infertiles we’ll know how to prepare them for this, or whatever other obstacles they might have to overcome.
Some people, like Mel, are thankful to have received honest information:
Well, my mother and grandmother are both pretty open and frank and shared their histories with me so there is no wonder, just knowledge.
Sometimes children find out because it’s obvious. I have a friend IRL for whom severe secondary infertility runs in the family. She was born 15 years after her sister, with no pregnancies in between. Her sister’s first and second pregnancies were 18 years apart, the second achieved through IVF. Her mother and sister were actually very open about it, but even if they weren’t, it’s not hard to do the math. As a direct result of this information, she chose to have her first child much earlier than any of her peers, because she knew it might take time for #2. Turns out she didn’t have any secondary infertility at all, and her second child arrived quickly and without incident, before many of her peers had even started thinking about their first child. I think she is glad to have erred on the side of caution.
But there must be people out there who think it’s better for children not to know (many of our own families, it would seem). Or people for whom the shame of infertility or loss is so strong that they can’t bear to reveal it to their children (most of the rest of our families, perhaps). I realize that the ALI blogosphere is not a representative sample, but I am curious to know whether anyone thinks it would be better to wait or withhold information altogether. Anyone taking a page from Sophocles and wanting to refrain from telling people their fate, lest they take inappropriate action to circumvent it?
As you might have guessed, I’m in favor of disclosure. It will be pretty obvious to my child that they were conceived through ART when they look through the baby book and find a photo of themselves as an 8-cell embryo. I also think that it conveys how very much a child was wanted to inform them about how much time and effort went into bringing them into the world. And, to the extent that I can, I would love to save my child some of the heartache of IF — either by encouraging them not to delay TTC once they think they’re ready, or to proceed more quickly to treatments instead of waiting around for years like I did. There’s also a difference between providing information about the parents and foretelling the child’s possible problems — I knew that there was some kind of infertility issue when I was in preschool, but I had been TTC for years before I ever connected the dots to my own fertility.
But at the same time, timing is tricky. Young children can’t fully grasp the information. Teenagers might misuse the information that they could have problems conceiving as an excuse to have unsafe sex (though DH would say, “My kid wouldn’t be that dumb”). We don’t want young adults to make hasty choices such as choosing the wrong partner because they want to hurry up and get married, or trying to family-build before they are ready. Do you work the infertility information into the “where do babies come from” talk? Into the “today you are a woman, here’s how to use a tampon” talk? Do you wait until the wedding? What if your child is 37 years old and unmarried — do you suggest that she start looking for a sperm donor? I think I’ll start explaining ART as soon as we address the Birds and the Bees, but I won’t start emphasizing the potential repercussions for the child’s own fertility until adolescence. But, I reserve the right to change my mind.
Today’s question is a Choose Your Own Adventure since situations vary. Or, you can embrace the hypothetical and answer all of the questions.
If your infertility or propensity for pregnancy loss may have a genetic component, and you end up with a genetic child, do you have a duty to inform that child? How much do you connect the dots between your history and the child’s possible future? If it’s clearly male-factor or female-factor (or if it’s a pregnancy loss issue that would only affect female children), do you only inform children of the corresponding sex, or do you tell all children? At what age/stage do you tell the child about your history and their possible future?
If your infertility or loss does not have a genetic component, or it is genetic but your child is not your genetic offspring, do you have a duty to tell the child information about yourself that is not directly relevant to their own fertility? Regardless of duty, would you tell?