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?

Of course its relevant.
If you don't mean financial what on earth do you mean?

What does 'emotional point of view' mean?

Also you did post this and it is very clear

However now that you have mentioned it, that is a further factor to consider. Resources are unfortunately limited and choosing to bring a disabled child into the world would take those resources from another

A further factor to consider?

So you do see it as an issue.

Not really. Because it is true, however chilling. I don't like it anymore than you do but it certainly wasn't anything to do with my argument that it isn't fair to the child. I am looking at things only from the perspective of the child - and that only. Whilst I am sympathetic to the parents wish for a child, I think it's hugely unfair to choose to conceive knowing that a child will have a shorter and painful illness. You should look at the childs best interests, over and above your own wishes.

I am only arguing this for babies that are chosen to be conceived. Accidental pregnancies or pregnancies before older children are diagnosed should have the best resources possible. But children that are actively chosen despite knowing they will have a hard, painful and short life? No because its not fair to the child. - finances are irrelevant.

emotional because it may be fine, closeted and protected within a family when a child is young. Quality of life might be ok despite pain because a child lives in the moment. But for many, it is emotionally hard making their way in a cruel world independently especially when parents can't cope anymore due to age or it's too much for them. Their safe world as a child is safe no more.

We are talking severe disabilities obviously

Anyway I'm not trying to upset anyone. It's a terribly difficult situation. I'm sorry if I have offended anyone. I really am only looking at it from the point of view of a child that is deliberately born into a hard, painful and shorter life.

I don't like it anymore than you do

Considering I'd never dream of arguing such a point, I think I do indeed like it less than you do.

but it certainly wasn't anything to do with my argument that it isn't fair to the child.

What part of "resources are unfortunately limited and choosing to bring a disabled child into the world would take those resources from another" is in the interests of the disabled child?

As I said it never crossed my mind until another pp mentioned it. Unfortunately it is true though. How can you argue not? I didn't say it was fair or right but it is true.

This thread has nothing to do with continuing with a pregnancy knowing that there is a disability (I have been in this position).
It's about knowing that you have a genetic condition that will be passed on and still choosing to conceive

Yes, but in either case, parents and families with actual experience of living with disability (from whatever cause and however foreseeable or not) are likely to (and some seem to) have a different perspective or understand different nuances , to families who do not.

The prejudice is SO ingrained that you think its true because you think it.

How many lives if disabled children are actually painful?

Some comditions are inherited via the mother but can have uncertain expression. Eg mitochondrial dna linked conditions. (I am no scientist but have indirect experience of these sorts of conditions.

It really is no-one's business but their's, OP.

As I said it never crossed my mind until another pp mentioned it. Unfortunately it is true though. How can you argue not? I didn't say it was fair or right but it is true.

Yes, it is true that anyone who requires any kind of medical assistance could be said to be taking resources from anyone else who also requires it. But most of us would never dream of using this as an argument in a (rather disgusting) thread about conceiving or continuing pregnancies of disabled children.

Most of us.

No one - not one person has ever mentioned on this thread that an existing pregnancy should not be continued. That is a totally different situation.
This is purely about actively choosing to conceive whilst knowing that a child will have a shorter painful life.

Likewise it is not a debate about disabilities that do not feature pain as part of their disability.

It's ok, dowhatnow. You've had a chance to retract that statement, you've chosen to stand by it, so we can all draw our conclusions about you from it.

My son is an adult (well in a couple of months he is). He's not alone in a cruel terrible world because he isn't capable of being alone. Independence is not something he will achieve unfortunately. He's certainly very expensive - and deserves every penny spent on him.

What about huntington's disease?
With 50/50 odds would you take the chance or use donor sperm/egg?

dear MN HQ do you remember the this is my child campaign?

I'm surprised the thread is still here actually.

Likewise it is not a debate about disabilities that do not feature pain as part of their disability

Says who? Pain wasn't mentioned in the OP. You can't decide what is and what is not relevant to a debate that has many members.

this is mn at its worst a NC coward starts a really vile thread,,and people post that is a discussion that should happen.
Or its that the OP phrased a debate awkwardly and insensitively but the actual issue (if you knew you were going to pass on a life limiting condition to a child and had recently tragically lost a child, would you choose to have another?) is an acceptable discussion that can be had without being a vile individual.

Its a real issue that affects people. Some its the decision to actively TTC, others have shares related situations eg thinks coming back during scans etc. All intereting and challenging situations.

Ive agreed and disagreed with people on this thread but feel that lots of people have raised interesting points (on both sides) and its important to work towards understanding different views.
Questions about pain/suffering and ethics have been around as long as humans. Just the situation that changes.

Just because you dont like a thread/ the way a thread goes doesnt mean it should be banned.

No. I don't think so.
How can a debate be based on such an ill informed OP?

She is making HUGE assumptions about that family based on what?

She doesn't even know the family. They are in a non related FB group with her.
Does she know that they knew the children would have the same condition?

How close in age were the children?
What is she basing the 'wrongness' of the situation on? Just that the children had short lives? The only life worth anything is a long one?

Lets not pretend the OP was after a debate. She was slagging off a bereaved family based on what she thinks she knows and how she feels about disability.

Furthermore, she admitted she'd name changed because she expected a pasting. If you think everyone's going to hate you based on what you're about to say, perhaps that's a sign that you should reconsider your thoughts on it.

With that said, I don't think the thread should be deleted but I would hope the OP and some others on here are reconsidering some of the awful things they've advocated.

I have 3 disabled dc.

Dd1 is never going to live independently. What type,of care she will need is still in question, but she will need care. Forever.

I had dd2 knowing that dd1 was not developing typically. Full knowledge that she was not 'normal', but no knowledge to what extent she would be affected.

Dd2 is also disabled, it not to the same extent that dd1 is.

I still had a third child.

He too is disabled. Again, not to the extent dd1 is, but he is still affected.

Selfish? Yes, probably, but that could be said of anyone who has more than one child, whatever their situation.

All my children are happy to be here, and have (within their limitations) a good life. Their lives all have equal value, despite their potential futures being so very different.

I don't know what the future holds for dd1. She is only 12, and it is impossible to predict.

Equally, I don't actually know what the future holds for dd2 or ds. We all like to think we know our dc's future is secure and predictable, but we don't. Right now, I could tell you that dd2 (10) will grow up, be reasonably successful academically, go to university, and have a pick of careers. She is certainly capable of that, but I don't actually know that she won't drop out (at any point) due to a whole range of potential problems; or that she won't (as I did) 'waste' her potential by settling down and having children (obviously my plan wasn't to be a sahm forever, but ummm, life intervened and the situation is what it is) and possibly her situation then may dictate what happens next; or maybe she'll just run away and joins the circus. Who the fuck knows?

Her life, with its different possibilities, isn't worth any more than dd1's life, which has less potential outcomes (no career, no children unless something goes horribly wrong). It's just different.

Maisy

All very well and good to ask and raise debate. Not under the circumstances it was written though.