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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

253 replies

stripedeyesdown · 23/03/2017 14:19

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?

OP posts:
FishInAWetSuitAndFlippers · 23/03/2017 14:50

You are a member of a group with a member who's third child has just died.

He has posted updates about it and obviously is feeling devastated.

Your first thought is to name change and then try and get them flamed on AIBU.

Maybe look at your own decision making process rather than trying to get others to slag off theirs.

Spikeyball · 23/03/2017 14:50

At least put your regular name, if indeed you have one, to this.

blackcatlover · 23/03/2017 14:50

What right have you got to sit in judgement on other people? You don't know the facts just the snippets you read on FB.

ImFuckingSpartacus · 23/03/2017 14:52

I've reported as well. This thread is pretty sick.

SparkleTwinkleGoldGlitter · 23/03/2017 14:53

It's easy to sit and judge but I think it's something that unless you were living the life they are you don't know what you would do.

Mrsknackered · 23/03/2017 14:56

Would I have more children if I knew they had 100% chance of being ill too? I don't know, how can you know unless your in the position.

Would I put a thread on AIBU about a family who have just lost a child?
Absolutely fucking not.

bigbluebus · 23/03/2017 14:59

I'm no genetics expert, but if only the mother was a carrier there can't be 100% chance of passing on the condition. Genetic conditions usually have a 1 in 4 or 1 in 2 chance of being inherited.

I know of a number of families who have had more than 1 child with an inherited condition. Some of them won't have know that child 1 had the condition when child 2 was conceived but others will have known. Clearly these parents are fully aware of the implications of their decision having cared for children with the condition previously, so I think they are better placed to make that decision than others on here who have no experience.

I have recently lost a DD with a life limiting condition. I did not know she would be born with her condition and neither myself or DH are carriers - it was just one of those things. I went on to have a 2nd child knowing of DD's condition even though the genetecists could not give me a 100% guarantee that I would not have another child with the same condition. As it turned out DC 2 didn't have it, but turned out to have another condition instead.

Do I wish I had never had over 22 years with my DD - not for 1 minute. Motherhood wasn't what I had planned and hoped for but I loved my DD to the ends of the earth and fought for her all the way. I miss her dreadfully and I expect these parents feel the same.

Strokkur · 23/03/2017 15:00

This thread is disgraceful.

I assume you are talking about a mitochondrial DNA condition -- even if the genetic mutation is passed on, these can affect people in vastly different ways thanks to the phenomenon of heterogeneity.

You have no idea what you are talking about.

Strokkur · 23/03/2017 15:01

When I say 'even if' the mutation is passed on, I mean to say that it is always passed on, but the effects are unpredictable.

Universitychallenging · 23/03/2017 15:01

You know. This is one of the main sites that parents of children with life limiting conditions use for support.

Wouldn't it be awful if some twat name changed to post a cowardly thread on here about how unreasonable they were knowing rightly that they might see it?

ADisappearingDreamOfYesterday · 23/03/2017 15:01

I really think you should have the courage of your convictions and post under your usual NC, OP. The very fact that you won't shows you know full well you are being unreasonable, let alone cruel and pretty awful really. Judging a bereaved parent and then inviting others to judge them? I would take a long hard look at yourself tbh.

No doubt you won't reveal your usual name which is a shame as I for one would like to avoid any further interactions with people like you and hate the thought of "talking" to someone who holds such repugnant views.

For the record, I have multiple Dc with a genetic condition. The first occurrence was attributed to birth trauma, in fact there wasn't the genetic know how to test for this condition anyway, then. It was only when subsequent DC presented with the same issue and technology had moved on, that they were diagnosed. Their conditions are life altering but not life threatening and the thought that there are people who judge me for having them, sickens me. It sickens me even more you are doing this anonymously. What an unpleasant coward you are coming across as.

Neverknowing · 23/03/2017 15:02

Not at all.
The children deserve to live as much as other children, their lives still mattered and you don't know they didn't enjoy their lives despite having moments of pain etc. It's sad but not selfish in my opinion.

Strokkur · 23/03/2017 15:03

I suggest you read this page from the inspiring and loving people at the Lily Foundation: www.thelilyfoundation.org.uk/mi/inheritance/

Then make a donation.

bialystockandbloom · 23/03/2017 15:03

bigbluebus Flowers Flowers

What a nasty shitty thread, hope it goes soon

Ihavefriends · 23/03/2017 15:05

The mother being the carrier doesn't affect the incidence and penetrance of the condition.

Are you sure you know as much as you think?

Areyoufree · 23/03/2017 15:06

@bigbluebus. I am so sorry for your loss. I can't even begin to imagine what you and your family are going through.

ADisappearingDreamOfYesterday · 23/03/2017 15:07

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Ihavefriends · 23/03/2017 15:08

Ah, I hadn't considered a mitochondrial condition.

But it could still have variable penetrance.

Show some respect for a grieving family, op.

Universitychallenging · 23/03/2017 15:08

Flowers bigbluebus

lougle · 23/03/2017 15:10

There are some thoughts that you should be ashamed of thinking and keep to yourself. If you have to name change before you start a thread because you're afraid of the backlash you'll get, it's a sign that it's one of those thoughts. Hmm

reuset · 23/03/2017 15:10

Sorry for your loss, bigblue. And sorry you have to see an OP like this. You can see the majority of us do not think like that.

PortiaCastis · 23/03/2017 15:10

Christ how disgusting can you get, family looses child so their business gets blasted all over an internet site

VladmirsPoutine · 23/03/2017 15:11

One parent being a carrier does not necessarily mean the condition will be passed down.

But that's not the point is it. If you genuinely wanted to have a frank discussion about the rights and wrongs (or rather the difficult choices to be made in these circumstances), you would have done so without dragging in someone else's very personal and heartbreaking situation.

Perhaps you misjudged the tone and thought your OP would give appropriate context. It hasn't. And you've come out of this looking like a horrible sensationalist poster.

ADisappearingDreamOfYesterday · 23/03/2017 15:13

I am sorry too bigbluebus. Flowers

When we had our genetic counselling when the test was available, they were talking about "odds" and DH and I felt in our hearts the odds would always only ever be 50:50, either they would or they wouldn't - you would never know for definite. If that makes any kind of sense at all?

Equally any one of us could have an accident or become ill (and actually I did). We just have to play the hand life deals us, and I like to think the vast vast majority of parents (and anyone really) genuinely does the best, for themselves and their families, that they can in terrible circumstances.

I think judging people in such terrible circumstances is horrifically arrogant as well as fucking horrible.

Laiste · 23/03/2017 15:17

Not good. There are some things that are better left unsaid in general chit chat and i think this is one of them.

Assuming you're on the side of 'No, they shouldn't have had the children', how far would you personally take that OP? How about older parents with a greater risk of various problems with the baby? They knew the risks too. How about the millions who might pass on a problem? Should they just not be parents to be on the safe side? How much risk is ok?

sigh