AIBU to continue having children? Despite knowing they all would have a life limiting condition.

[stripedeyesdown]

I have named changed as i am probably going to get flamed for this.

I am a member of a Facebook group, i have just seen a post & a child of a member of this group has recently died.

It was noted on the message that this is their 3rd child, who has died from the same genetic life limiting condition.

They knowlingly went ahead with the following 2 pregnancies, knowing the children would be severely disabled with little quality of life.

AIBU to think that they have been selfish for a number of reasons, to continue having children knowing that each child would be born with this life limiting condition?

Heartbreaking As a personal thing I'd not have children if I knew they'd be unwell their whole lives, but who knows what the couple knew or thought?

It's not something I'd do.

And I DO judge anyone who would do that

Who gives a fuck if you do?

As my mum always says 'everyone has the right to have children' some horrible people out there definatly shouldn't, that's another story.
I'm unsure as to what I would do in this situation, but I know If I lost a first child due to a condition they inherited I wouldn't be able to go on to have more, I think that would be irresponsible and heartbreaking.

How awful.

I can't even begin to imagine, no, can't actually bring myself to imagine, what the pain must be like when you lose your child.

How could anyone possibly sit in judgement of this poor family?

Sometimes I genuinely can't believe the mean spirited shite I read on here. I hope karma bites you hard on the arse.

Seriously people, have a good hard look at yourselves. I know we all talk some shit on here, but on this thread you are actually pontificating and pronouncing on whether real people should have concieved and given birth to the their now dead 3 children.
Seriously. Is that something you should be doing with your time? Or does it make you a giant cunt?

Why would you knowingly choose to put a child through all that pain and trauma? I'm with you op.

And I nearly didn't post because of all the vitriol. I bet there are many who agree and dare not post.

This is was the only name change I have done & only responded under this name.

I have not used swearing nor hurled abuse at anyone, I asked a question, albeit, a controversial question at that.

I don't dispute that the family have experienced the most heartbreaking anguish, but they did knowingly again went on to have other children who would be affected. As stated by the parents.

I just personally couldn't put any of my future children through that. Or go myself & partner. Why would you. There you go thats my actual opinion.

Incorrect assumptions have been made of me & my situation, I am not a coward nor am I a horrible person & I am certainly not ashamed of myself. Neither am I a keyboard warrior who would not dare speak to another person face to face, the way I abused on here today.

depends. it may be life limiting but not a lesser quality of life. Life limiting can mean passing away as late as 40s or 50s not always in childhood.

I don't think YAB massively U for asking the question OP. My ds carries the CF gene. Total shocker to dh and I since it means that at least one of us it too but we didn't know because it wasn't tested for until 2007 in newborns. If we were to plan another baby, we'd both be tested first. If it turns out it is just one of us, we'd continue with our plan. If we are both carriers then no, we wouldn't try for another baby. Life is hard enough if you don't have disabilities/life limiting conditions. I wouldn't want to take the chance that my next baby would be born with CF. As much as I could take care of them, it's not me going through it every day.

Badly worded question maybe, and so difficult to answer without context behind it, but not an unreasonable thing to necessarily think or ask. My family has a degenerative genetic condition, it's a horrible condition and for older generations causes a slow and painful decline, younger generations the condition is more severe. Three generations of my family have it....not through choice, but as the condition doesn't come to light until later in life.

I know that I would make a choice to not have a child if i knew they would have the condition, I would not wish for anyone to suffer as we have already seen in my family members. However everyone is entitled to make their own choices and what is right and works for one family may not work for others.

Why would you knowingly choose to put a child through all that pain and trauma? I'm with you op.

Me too. If the risk is low, or the condition still means a good quality of life, then fine, but if you know that they will have it, and they will have a short, pain filled life, then to choose to inflict that suffering on others doesn't seem like a very loving thing for a parent to choose to do.

I agree bluesky. I would question if there parents were getting the right sort of emotional support and if there were issues behind doing it over and over again. Either that they hadn't accepted that all their children would have this condition. Or possibly, even more sadly, a tiny number parents do thrive on the attention of being the parent of a sick child to the point where they will sometimes make them sick for attention. Some of the other bits about this make me feel a bit uncomfortable too, like oversharing in a bit of an inappropriate place.

I would feel sympathetic towards them, whatever was going on. But I can't help feeling it would make me feel a little uncomfortable seeing children just born to be in pain, sick and then die without quality of life. That feels cruel.

I don't understand the hysterical outrage here. Your question seems perfectly normal and I've heard people discuss this irl. I also think YANBU - I wouldn't want to inflict that on a child.

I asked a question, albeit, a controversial question at that

Do you really not see how your title appears to ask a question about your own situation, but then your post offers a judgey opinion about someone else? And that, as many posters have pointed out, could be very upsetting for MN posters who live with genetic conditions and come here to discus the situation with you?

Can you really not see that?' Several people have pointed this out.

It IS a valid discussion. You have just gone about it in an insensitive way.

Typically you need to wade through a few pages of "you're a cunt for speculating about anything (on an online forum specifically designed for exchanging ideas )" before getting a glimpse of an actual discussion.

It's an interesting question.

Would I deliberately have more children, knowing that their chances of having a life-limiting condition was around 50% ? No, probably not. This family made a different choice, one that I expect wasn't made lightly and my heart goes out to them for the agony of the decision as well as their losses.

In their Facebook posts did they talk about their thought process when choosing to have more children?

It would depend what the genetic illness was and also they may well of had the children before the first was diagnosed. Also outlook for children changes as medicine advances. I married into a family where there was a child was and still is a child with a life limiting illness. I was told he would walk at our wedding he did. I was told he would die a teenager he is now a adult.
We chose to have children knowing that if someone had made a mistake and my dh did have it or was a carrier he had never been tested but reading up on the condition that it was I found out. Our child/ children may have it and we may not find out for a long time.
I now feel they don't know as much as they think they know about these things.
If you end pregnancy because your child is not perfect where does it end. A adult with downs can lead a fulfilling independent life, While changing many lives along the way.

The Gikf states have extremely high rates of multiple generation first cousin marriages, which can lead to severe medical conditions. It's better to be given the best available information to help people make decisions in almost any case.

If you feel no shame at all (which would speak volumes) why NC?

You've asked a question with a judgement attached in the use of the word selfish. Have you perhaps asked it because you feel that way and are uncomfortable with your feelings? Looking inwards might be a better course of action than starting insensitive threads. But maybe I'm being too kind and you were just hoping to feel vindicated in your judgement of other people's pain.

I thought the OP was opening a discussion on ethics e.g. if you knew a baby would have a life limiting condition (and you'd tragically already lost a child), would you continue to have more biological children?

Their wording was clumsy and I'm not sure any reference to a family on fb was needed really but I can see why they maybe wanted to give context.

Personally, it would depend on the condition but if I knew that my future child was going to suffer then i wouldn't try for a biological child. I would adopt. I simply can't fathom actively trying for a child, carrying it for 9 months, going througg labour knowing that theyll have a short and painful life. Selfish is rhe wrong word (because they obviously have their reasons) but it's the closest word I can think of.

Obviously being in that situation would be very different and it must be very difficukt for the original family.

We have three boys with CF in our family, they have all died. The ridiculous and venomous responses to a perfectly valid question are shameful.

It's an online forum, you don't get to police what other people post and how their thoughts evolve.

Bore off with your repetitive 'cunt' comments.

It is selfish.

I know someone who has done this. Her second child has MD - with a life expectancy in the teens or early 20s and no mobility by high school age - and she went on to have a third knowing that there was a 50% risk of the next child having the same condition.

Perhaps it isn't "my business", but that doesn't stop it from being a reckless and selfish decision.