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?

[QueenOfTheCatBastards]

If I knew that there was a high likelihood of a child I conceived having an illness that meant they'd have no quality of life I would do everything in my power to not become pregnant.

I don't judge people who continue to have children in similar circumstances, but I can't say that I understand their actions either.

Contrary to what somebody posted upthread, children aren't a right, they're a possibility and a responsibility. If that makes sense? I'd rather not knowingly have a child if that child is going to know nothing but pain.

[SoulAccount]

It is a valid discussion and question, especially if it starts by asking people who have some experience how they feel, and why they made their choices.

So much experience on MN. People who have had children with life limiting conditions , people who may have been born with inherited conditions themselves.

I always thought that if CVS or amino or similar revealed a 'not compatible with life ' condition I would terminate.

But then I read a MNer talking about her decision to continue her pregnancy knowing that her baby would not survive. She spoke so movingly of the importance of knowing her baby for a few short days, what it brought them as a family, the positiveness of knowing and holding the baby and the baby having a few days loved and cuddled, that I became much less sure that I knew what I would do in that situation.

My only issue with this thread is the misleading title and pre judging.

[Applebite]

The question may be valid, but the way it was phrased is judgy and unpleasant to read, IMO. Had the OP put: "if you knew your children would have a life limiting genetic condition, would you have any?" as a hypothetical question, I would have felt more like engaging with it.

The way it's put, talking about this poor family behind their backs, talking about their lost children and judging them for doing it makes me feel like yelling, "stop judging you judgey twat" instead.

[LolaTheDarkdestroyer]

Though it's not appropriate, I do agree op it is selfish to the child to have to go through all that pain so young and then to die anyway. You can't be 100% though that they knew the kids would all be born with it?

[dowhatnow]

If you end pregnancy because your child is not perfect where does it end.
That's a different discussion to this one. This one is about choosing to have more children knowing that they will have a life limiting condition.

[Devilishpyjamas]

Well I knew when ds3 was conceived (accidentally) that he was at 'high risk' (of undefined %) of having the same condition as ds1. Ds1 now requires 24 hour 2:1 care - his life still has a much value as his brothers btw - it isn't a shadow of a 'normal' life - it's an equal life and he has an equal right to it.

The only condition I personally would terminate for would be anencephaly or something equally terminal - already knew I would not terminate for T18 or T13 (entirely my choice - none of my business what others do) - so of course we continued with the pregnancy & had him risks and all. If that makes us selfish so be it.

Being born 'normal' is no guarantee of a happy fulfilled life. Being born disabled does not automatically mean a tragic life.

[AyeAmarok]

Horrible thread.

Your title implies you had the children.

And now you're back-pedaling trying to be compassionate for the parents in your concern. Which isn't what your judgemental, nasty OP said.

[dowhatnow]

Part of being a good parent is putting your child before your own wishes and desires. If you definitely know there is a good chance that any child you conceive is going to have a hard and short life to contend with, then that isn't putting your childs best interests before your own. So yes whilst I sympathise, I do think its selfish.

[Devilishpyjamas]

I wonder how many of you detailing why you wouldn't do it have any experience of severe disability (and I don't mean via some distant relative you see once a year - I mean proper lived experience).

[dowhatnow]

But devil that is a different discussion. Once a child is already on its way then it is a much, much harder decision. Yours was an accidental conception. Would you have deliberately conceived knowing what you do?

[Devilishpyjamas]

Yes. If I wanted another. So shoot me.

You are making huge assumptions about the value of Ds1's life.

[MaisyPops]

Devilishpyjamas
No immediate experience of severe disability.
To me (in my head at least) there's a big ethical difference between TTC and then finding out your unborn baby is considered 'high risk' with a chance of disability and actively TTC knowing a child could a have a short, painful life.

In the first situation, thats a masisve decision to make but I support a womans decision to choose (even if it may not be the choice I make). The second, i cant shake the feeling that its about putting thr needs to the adults over the suffering of a child.

[dowhatnow]

I might be making huge assumptions but personally I couldn't do it. I've no doubt that you are a wonderful mum, but equally we are entitled to our own opinions. I don't think it is fair on the child.

[Devilishpyjamas]

Define 'short painful life'. From whose perspective? Who gets to decide which lives are too short and painful to be allowable?

No one has the right to define a life as too short or too painful except the person living it.

So many assumptions have been made about what the parents knew and their known risks. Unless you were sat in the room for their genetic counselling you have no idea what they were told when.

[LoisWilkersonsLastNerve]

You could have asked the question in a general sense. Linking it to a real family was in poor taste. They are bereaved and imagine if they saw this?

[dowhatnow]

Well I guess that we decide for ourselves, but given that the person living it has no choice in the matter, we have to make that decision to conceive or not, for them. You are entitled to your own opinion and choice but likewise so are people who disagree with you.

[Devilishpyjamas]

Well yes I said earlier I wouldn't terminate for T13 or T18 but had no issue with those that do. Although actually prior to having ds1 and some lived experience with severe disability I would have.

Each case is individual and each choice is individual but I find the underlying current on this thread - that a disabled life does not have as much value as a 'normal' life very sad.

Fwiw for anyone getting enraged about it ds3 does not have Ds1's disability and with any luck will have a long, independent life. It shouldn't make any difference - had he been born with the same condition as Ds1 his life would have had the same value.

(We had ds2 before we knew the issues with ds1 - not that it would have cchanged anything).

[BorrowedHeart]

I have a child who had a heart condition from birth, we still don't know what caused it or when it happened, but the theory is a blood clot during her birth. I would love a third child, but I am nervous that they will have the same condition (genetic testing came back negative) there is a higher chance after having one child with the condition of the next child also having it. This is where it gets difficult, we may not know until the baby is born if it's ok or not, it's an awful condition. My daughter couldn't live with it and it was killing her, so she ended up down the transplant route, that I class as a lifelong illness with no actual date as to when it will fail, but it will. I couldn't do all this again, I have regrets about even having a second child, in my opinion given what I've gone through, if there was any sign of a lifelong dinilitating illness on any scans etc I feel like I would have to abort as I couldn't put my child and myself what I've already been through, (if it was an illness where the child would die within hours of birth 100% then I would probably carry to term and donate the baby's organs) it's tough but I can see why you would keep having kids in the hope that one would be healthy and you could give all the love you have, that can't be given to the Ines who passed away. I don't think we should judge but I would think to myself, if you are 100% certain your child will be ill why would you risk it?

[LouKout]

My child has severe non verbal autism

To many this would mean she must be unhappy and have a miserable life.

On the contrary she is the happiest person I and most people who meet her have ever met.

[LazySusan11]

Personally no I wouldn't but that's because I couldn't deal with the pain of those losses, you don't know the parents or their capacity to love and what their 3 children brought into their lives. They may have had wonderful years with them that brought them such joy they were able to have loved greatly and suffered a loss than to never have loved a child at all.

[Bluesrunthegame]

Part of being a good parent is putting your child before your own wishes and desires. If you definitely know there is a good chance that any child you conceive is going to have a hard and short life to contend with, then that isn't putting your child's best interests before your own. So yes whilst I sympathise, I do think its selfish.

This. Bringing a baby into this world who is going to have a short but hard life.

I also wonder why a parent would give themselves the pain of seeing their babies suffer and then die. I can't begin to comprehend the enormous grief and shock when this happened to a first baby, but then to have more babies who will suffer and die in the same way is beyond anything I can understand.

[Headofthehive55]

I think a 50% is good odds actually.

[Headofthehive55]

Where does it end though.
I have a brac 1 mutation - 50% of passing on a gene that would almost certainly lead to daughters getting cancer. Should I not have had kids? Medical advances change the game all the time.

[remoaniac]

I had a work colleague whose first child was severely disabled and needed 24 hour care. It was a genetic condition so they did not have any more children for several years. I understand that eventually they were able to have genetic screening, so they went on to have 4 healthy children (with quite a large age gap from the oldest).

If I already had a disabled child who needed 24 hour care I would not be having any more children. I know my limitations and I would not be able to cope. As it was, even though my first and only child was healthy, I decided to quit while I was ahead and stick with one.