Thoughtful Thursday: Duty to Warn

February 26, 2009

Thoughtful ThursdayAt 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.

Heather said:

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.

Lindsay, the Steadfast Warrior said:

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.

Sassy said:

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?

or…

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?

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22 Responses to “Thoughtful Thursday: Duty to Warn”


  1. Our problems with conceiving isn’t genetic. I know what happened to cause my miscarriages and the 5 years it took to have our son after we had our daughter. Although, my daughter was only 2 and 4 when I had my miscarriages, she knows about them. I’ve been very honest and upfront about our troubles with having children. She’s asked before and my son just a few days ago, why we only have 2 kids in our family. I tell them that my body doesn’t work the way some women’s bodies do. And then I allow them to ask further questions, if needed. My daughter knows about the whole history, my son is too young to understand. I’ll talk to him about it, though. I don’t see the need to not tell either of them. It’s part of their lives, as well.

  2. Dora Says:

    Tell, tell, tell. Secrets are bad.

    My IF is age related, although an undiagnosed large submucosal uterine polyp likely stole the last of my fertile years. My child will not be genetically related to me, and I absolutely believe they are entitled to know their origins.

    I’ve been thinking that if I have a daughter I might offer her egg freezing as a college graduation gift. This technology is still relatively new, but it won’t be by then.

  3. Eve Says:

    I left a comment last week discussing that infertility runs rampant in my family. My mom had issues, as do I, and many of my female cousins. I will handle it the way my mom did with me…it was just a part of my story. I was five and six years younger than my siblings, so when my sister told me the invitable mean sis thing to say “Mom and Dad didn’t want you, you were a mistake. Why do you think you’re so much younger than us?”, my mom answered my worries with, “Honey, we wanted you so badly I had to take medicine to have you.” We are so open with IF in my family, my ds will know how he came to be. I’m thankful, in that case, that he IS a boy…if I have a girl, we will definitely have to discuss her options for fertility as she gets older.

    BTW, I tagged you for an award on my blog today! I’m a new follower here, but I’ve only been blogging since January, so I’m new everywhere, lol!!!

    {Eve} http://infertilityrocks.wordpress.com/

  4. fattykins Says:

    I don’t know. Good answer, huh? My mother didn’t have the problems I have (PCOS) and my daughter might not either. I think for me, I will wait until she is either married, in a serious relationship, or if she’s single past college…sometime when I feel the time is right. She might not have it. My mom didn’t….I did…seems pretty hit or miss.

    I just don’t know. I look forward to reading the other comments!

  5. Kim Says:

    I cannot find a genetic link to my infertility. My mom’s pregnancies with my brother and I were “surprises”. She was even using protection when she got pg with my brother!

    I did however find that my insulin resistance which goes hand in hand with PCOS, did come from my father’s side. In men high insulin levels can show up as heart problems and high triglycerides. My Dad and all of his brothers have both!

    I will definitely tell my children about my struggles when they are old enough to understand. I have three bio boys and am expecting the referral of a baby girl in the next few months. Part of me secretly hopes that she will have no trouble getting pg if and when she wants too!

  6. theworms Says:

    I think you should tell. We have MFI (NOA) and if we are blessed with children, especially boys we will tell them what we had to do to have children and that they may be at risk for MFI.

  7. Heather Says:

    Another great question, since we just found out we are expecting twin boys and our issue is female-related infertility issues. I have had endometriosis issues that were identified a decade ago when I was in my late 20s which had blocked my fallopian tubes. Our daughter knows (at 8 years) that we’ve needed to do IVF where they take Mommy’s eggs and Daddy’s sperm and put them together for us to have these babies. She also knows that lots of other people have sex to have babies and not this doctor stuff we did. I will be explaining to her what endometriosis is and fallopian tube issues. With the boys, I’ll explain what my issues were as they get to that part of the “Birds and the Bees” discussions too, but I’ll also be telling them to be careful, because if their “stuff” is like their Dad’s “stuff” it’s pretty potent! Our doctors have laughed at my DH’s samples because they are amazing. And his parents have 8 kids for probably the same reason.


  8. I’m taking Door #2.

    I wouldn’t consider it a duty, as if I’m morally obligated to share with my children my struggles with IF. By dwelling on that, I might inadvertently make them feel second-best, negating their very existence in my life by lamenting lost phantom children I never had.

    I do not feel this way, and I would never want them to think I do.

    However, I will be very upfront with them about my journey. Soon they will be able to read and navigate a computer and read everything I’ve ever written on the subject. I have kept that in mind as I write ;-).

    My own IF history has very little to do with their fortunes, fertility-wise. Nevertheless, I will talk to them about timing their child-bearing efforts. It’ll be a Goldilocks story — not too early and not too late. Aim for just right.

    So, in summary, I will tell but not dwell.


  9. This is a great question. I just had a extended family baby shower back in my hometown thrown by my sister, and when I mentioned IVF, I realized from the blank stares I was getting that my sister hadn’t mentioned it to any of my other family members.

    On one hand, I love her for trying to protect me. On the other hand I feel this secretiveness adds to the stigma of IVF. I try very hard to be out and informative about my IVF experience, and I like that later on a cousin, who might have male-factor problems w/ a BF she is expecting to marry felt comfortable enough to ask me about this.

    I’ve had a lot of private and offline conversations with friends who are afraid to talk about their fertility issues in real life. I’m actually shocked by the number of people that have approached me about this. So I feel that it’s important to be a resource in this regard.

    However, children are another matter. I, too, will have embryo pics for both of my children and I’ve always held with the notion that if they’re old enough to ask, then they’re old enough to know. So I’ll wait til then to discuss their conception with them.

    Also, there’s a lot of other info that I need to force on them from an early age, since they’re also biracial. So, I think the IVF conversation can wait until the time is right, but we’ll definitely have it.

    Ernessa

  10. Anita Says:

    Great questions…I am certain that I wouldn’t want to hide any information but i’m not really sure how and when I would tell them. My kids will always know how much we wanted them and they were our miricle babies. As they got older if I got asked direct questions about it then I would certainly discuss it. When I started TTC I asked my mom if she had any fertility issues/treatment. I will also try to openly talk to my daughter about her cycles so that if there are any concerns they can be dealt with. As far as sons and MFI goes…i’m not sure except that if he was TTC i’d tell him to give a sample asap and not leave it 3 years like us.

    I’ve enjoyed reading the other comments and it’s got me thinking – thanks 🙂

  11. Annie Says:

    Yes, I do think it is something that we should share with our children. As for when and how to share, well that is just going to depend on the situation.

    For myself, I wish someone could’ve told me, “Hey, you may have this genetic mutation that could cause miscarriages,” before I started TTC. But in my case, my mother didn’t know. She did have 2 m/c, but also had 3 children and didn’t have any testing done. It wasn’t until after my 3 losses (and 1 living child) that I got tested and found out that the problem that might have caused those losses was genetic. Since then my parents have been tested (because this problem MTHFR, can have other consequences as far as heart disease, stroke, blood clots, etc) and it is a good thing because it turns out my dad needs the same meds I am on. I know I have already tried to get my sister to get tested and urged her to at least get tested before she TTC, hopefully to save her the pain of multiple losses if she can get on some meds from the beginning. I plan to tell our children regardless, but if we have any daughters I would definitely want them to know how important it is to get tested and be prepared before TTC so they can avoid multiple m/c as much as possible.


  12. As you could probably tell from my comments last week, I am in favour of disclosure too. But it’s more complex than just telling my daughter(s) (and sons in the case of fibro) that there is a history of chronic illness and pregnancy loss in the family.

    At the heart of all of this is really the issue of education. I truly believe that if we educated our children about reproductive health at the same time as we’re telling them about sex and babies, they would be less shocked if they found out that they had issues. I also believe that we do not teach our daughters enough about their own cycles.

    Imagine if we grew up aware about the regularity of our cycles. Having really irregular or really short cycles all your life is a pretty significant sign that there may be issues. But we don’t know any of this until we’ve decide to try for children. We should be taught about luteal phases and hormones and how ovulation actually works. And taught that while most people have no issues and have children easily, some may experience infertility and loss.

    I also agree that having such discussions have to be timed right. I think that that is a decision each parent has to make.

  13. WiseGuy Says:

    Considering that my case is not that of bad genes, I am sure that if I ever have children, I would possibly not pass this on to them.

    Would I? Yes!

    I did not receive full disclosure, because there really were not issues of that kind floating in the family gene pool. I heard of miscarriages or losses, but that were at a point when I was not worried about my own fertility.

    It is only after trying and trying that I started stitching the pieces together – a patchwork quilt of losses rather than inability to conceive.

    If I ever have children, I have already decided that I would let them know about what I have gone through.

    I would most likely let them be aware, when they are of marriageable age and all.

    Unfortunately, in the kind of environs I am in, my children and I may be constantly reminded of how tough it was for me to bring them in my life.

    I don’t know – but I am telling them. Secondly, I may not let my daughter use hormones to prevent pregnancy.


  14. Well, I’m of the view that ‘full and frank disclosure’ (a phrase now defined by several Australian courts particularly in equity) is paramount. Has my opinion on this changed because of my own experiences? Hell yes. I don’t think I ever had an opinion or a care factor before we started the IVF.

    Now. I’m a product of my infertility and related experiences, so to speak.

    We have male fertility issues because of a vasectomy and to a degree, age. That’s explainable fairly easily (although its usually difficult for DH to explain this without an element of rage against the ex whose idea it was … but I digress).

    I have PCOS. There is definitely a hereditary element to it. Every 5th woman I meet has PCOS (only slight exaggeration). My mother had “cysts” later in life but she had me within a year of marrying my father. My sister was born 6 years later. Was that because they didn’t try until later? Were they trying and it just didn’t work? Why did she have a hysterectomy when I was in my teens? I don’t have this information and it frustrates the shit out of me. Just in case its relevant.

    My mother has mentioned she’s never had a miscarriage. So I’m thinking her cysts were a ‘one off’ thing? My maternal grandmom had a miscarriage before having 5 healthy girls. I have absolutely no information about my father’s side of the family, except that they were from a podunk lil town and judging from the 11 offspring, there wasn’t anything to do around there!!

    One of the key issues of PCOS is lower quality eggs and/or hormonal imbalances. Another tragic issue that stems from this is early pregnancy failure, i.e. miscarriages. I’ve had several that we could put down to chromosomal abnormalities. But to top if off, we had a totally inexplicable second trimester death of our daughter. She was perfect…so why?

    Regardless of whether we have a live child that is genetically ours or not, I think that our infertility has become so much a part of our lives that it would be difficult to conceal to our children. Case in point: our daughter Janaki’s photo album consists of photos from when she was a 6-8 cell embryo, we move on to blastocyst images, then very early pregnancy scans and so forth. Here, “normal” (fertile/non IVF/non IF) people don’t usually get to have first trimester scans unless they have had a history of miscarriages. So if the embryonic images don’t give it away, the early scans will.

    I think if you’re thinking about disclosure, “full and frank” is the way to go. I’m prejudiced by my own experiences of course. Oh how I’d love to be armed with the knowledge of my ancestors as I confidently stride into my doctor’s office and say… THERE. YOU HAVE IT. NOW, FIX ME.

    Its either everything or nothing. None of that half assed vague “oh we had some problems mumble mumble” followed by silence crap. Everything and anything relevant. On the table.

    As to WHEN to raise this… ahh. I don’t think there is a right age. Definitely all children deserve to know, male and female. Perhaps from an early age when you tell the children about their IVF background or donor background. Sort of ‘ease’ them into the sitch casually, so that its not an earth shattering event. Hopefully when its their turn to make babies IVF will be a more exact science rather than the embryo transfer and praying to gods hoodoo bullshit it is now. Will it make them panic and have babies at 15? I fucking hope not. Hopefully, we’ll raise them to know better.

    There has to be a balance somewhere, and to try and define the balance before the child is born – is counting the grand-chickens before they’re hatched).

    Another well planned TT. 🙂

  15. strongblonde Says:

    …but who knows where we will be in regards to infertility technology in 20 years when our kids are entering the TTC time of their lives. i’m in favor of full disclosure, too, but it may end up being a moot point.

  16. Cat Says:

    Genetic children or not, I will tell. We have no idea if our issues-blocked tubes, low-end-of average counts-are genetic, but there are so many different reasons for IF that I’d want my child to be prepared for the possibility.

    I think I’ll talk about ART alongside the traditional “birds and the bees” talk as soon as they start asking questions and keep all the answers age-appropriate. I’ll save any dire warnings about their own fertility until they’re a little older, like late teenage years or college. Regardless of what they have or have not inherited, I just want them to know that it’s not a given that they’ll get pregnant right after they decide to. It’ll probably be a lot like the advice I’m giving my IVF cheerleader friend who’s TTC right now. Just FYI, don’t wait too long to get this checked, kind of advice.

    I’d also like to teach about the difficulty of the entire journey so my child is more sensitive to others when they and their friends start planning for and having babies. None of my friends really understand what it’s like to go through IF, but I’d like my child to, so even if they don’t have any problems themselves they can still be empathetic and helpful to others who do have trouble.

  17. Heather Says:

    These posts have been so interesting, I had to nominate you for an award on my blog today. You can come over to my blog for the details. Keep asking the probing questions. These are great!

  18. Leslie Laine Says:

    Good question –

    I am not the product of infertility. I seem to be the first in my family to struggle with this problem, on both sides of my family and on both sides of hubby’s.

    I struggle with the way IF is such a secretive thing, and I’ve tried to work on that for myself. I often wish I felt more comfortable just being out with what’s going on with us. We have shared our IF struggle with more people that I ever thought we would, but it’s still not something I feel particularly comfortable discussing in passing.

    I want to be honest with our child about how he/she came into the world because I’m of the mind that IF is a journey of the truest form of love and faith, and I want our child to know that he/she is a product of that. However, I realize that I will have to be completely comfortable with the full disclosure before I go about explaining it to our child.

    I think that I will be when this part of my life comes to a close, whatever happens for us. I am now working toward taking this journey one step at a time, and when the time arrives to accept the next fork in the road, I’ll be ready to take it.

    So, I’m a believer in full disclosure when the time is right. It has been of tremendous comfort to me to be able to ask my mom about her reproductive history, whether or not she needed protection in her 30s and when menopause was an issue for her. I want my child to have the same.

  19. FatChick Says:

    I am definitely for full disclosure. I knew that my mom had several miscarriages, and so I was able to tell my RE that this might be a problem for me (especially since I’ve had 2). IF is a very difficult emotional rollercoaster, and I think disclosing it to my kids will help them should they have to deal with it (and I pray they don’t).

    ICLW

  20. Shelby Says:

    What a great topic, one that I have pondered a lot already, especially given that my husband and I have both male factor and female factor IF and both of our parents also went through their own fertility-challenged hurdles leading me to conclude that genetics do play a part. While my Father was very fertile (I was his 8th child) I was my Mother’s only and after 5 years of passive trying, they finally conceived me (without assistance). I always knew that given this and the fact that my constant pleading for a sibling went unmet that there was some fertility issues, so much so that from a very early age I suspected that having children would not come easily to me. Nevertheless, this did not prompt me to try before I was ready.

    On top of this, my husband is a triplet from Clomid, so we are no doubt facing a genetic component. If we do conceive, I feel that it will be my duty to inform my children completely and I will do so in the same way you have mentioned: when the topic of the birds and the bees come up (I can just imagine it: “where do babies come from?” “well, honey…” that will be a long discussion!) In fact, I think normalizing ART as a way of building a family is just as important as discussing adoption. It is neither shameful nor, unfortunately, completely uncommon anymore. So, if my kids request my medical records, I’ll gladly hand over my IF treatment binder…all ten pounds of it.


  21. I think there is a duty to share medical information that may help my (potential) offspring create (potential) offspring of their own. My mom was fairly open about her difficulties in getting/staying pregnant as well as her stunningly early menopause (complete by 40), so I knew to start early and agressively. I appreciate that, especially the knowledge that my fertile window may be 10 years shorter than it is for some women.

    My daughter isn’t biologically related to me, as my partner carried her and we used an anonymous donor. Therefore, she has no infertility in her genetic makeup. As she grows up, though, I will share information with her about my struggles. Not because she’ll be prone to IF, but because our whole family structure has been impacted by it. She’s been an only child for nearly five years, the last three inintentionally. She’s no doubt noticed my sadness, no matter how hard I try to maintain normalcy. And someday she may find herself with a much younger sibling, which will no doubt mess with her darling little mind.

    I think that telling kids about the journey is an important part of the “You were so wanted, so loved before you were with us, that we….” story. No matter how IFers create their families, we know that the creation was intentional and driven by love.

  22. Mel Says:

    Tell, tell, tell. And then tell some more. We’ve already started somewhat so there won’t be a day that they find out. It will be more of gradual knowledge (which is how our parents told us everything pretty much throughout our lives so there was never a day that I can point to where I learned major information). We’ve told them that I have a problem with my body and I need help to make a baby and sometimes, even the doctor can’t help me. And that’s enough right now. When they ask questions, I always answer them. When they’re older, I’ll probably also have them tested for the clotting disorders just because those could lead to other health problems. And I’d tell my daughter that I’d like to support her when she starts trying to conceive (or my son if he’s…um…into sharing that type of stuff) and help her–like my mother did–if it turns out that she needs assistance.


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