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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think 'incompatible with life' is unacceptable

208 replies

TheDisillusionedAnarchist · 24/10/2015 14:43

Another day, another thread on here about screening. Another person describing certain disabilities as 'incompatible with life'.

Surely this term is disablist and unacceptable and needs to go. Really is it okay to describe people as 'incompatible with life' . What does it even mean?

Babies with conditions like trisomy 13 or 18 or anencephaly are very much alive, even if they do not survive to birth , they matter to the people who care about them. Their parents and family and some do survive sometimes for 20 and 30 years. Yes they have severe disabilities, yes they require support to live but they are alive.

Today my daughter with trisomy 18 celebrates her first month birthday. Aibu to hope that today might be the last time I read 'incompatible with life' to describe her on here.

To think 'incompatible with life' is unacceptable
OP posts:
bimandbam · 24/10/2015 19:24

I haven't read your full thread but I read your other one.

She is absolutely beautiful. You must be so proud and so thrilled to have her here. I hope you have many more days together. Congratulations again on your beautiful baby girl. She is very special and I wish your journey could have been different. But it is still your journey and every single minute is precious with a newborn. Xxx

bumbleymummy · 24/10/2015 19:28

You're entitled to your opinion MoS. Feel free to remove the 'therefore' if it bothers you.

MaidOfStars · 24/10/2015 19:30

I'd replace it with 'so, in my opinion'

bumbleymummy · 24/10/2015 19:37

Well you can put that at the start of the sentence if you like but I don't think it would replace the 'therefore' in the middle because the latter part of the sentence isn't what my opinion is. I don't think their life isn't as worthwhile as someone without the condition.

NumbBlaseCold · 24/10/2015 19:52

It is just a medical term, I believed it meant unable to survive to birth.

That doesn't mean that it's not hurtful, perhaps inappropriate and shouldn't be scrutinised and looked at.

I was heartbroken by the words 'spontaneous abortion', ERPC and POC after my miscarriage.

The last two were on a form to a laboratory, the first was used by someone who should have known better.

The first is no longer really being used thankfully due to sensitivity of the name and the other two are being scrutinised.

Perhaps this is another term that should also be?

Your daughter is beautiful.

bumbleymummy · 24/10/2015 19:55

Yy to POC Numb :( it upset me too. Thanks

NeedAScarfForMyGiraffe · 24/10/2015 20:01

This reply has been deleted

Message withdrawn at poster's request.

BitchPeas · 24/10/2015 20:20

StripeyGruffalo

You've misunderstood me. This is about medical terminology not actual conditions like cancer or asthma.

I was using those phrases as examples of medical terminology to compare to the 'incompatible with life' diagnosis. Not comparing the conditions.

RandomMess · 24/10/2015 20:29

Would "limited life expectancy" be a more appropriate term, if not what would be?

KittyandTeal · 24/10/2015 20:35

Limited life expectancy might work with some cases. However, in many cases the baby will not survive to term or birth in which case the phrase might raise expectations and hopes.

It's such a hard one. I think one term may be fine for one family and hurtful for another. I think the important thing is that doctors explain the implications on life (or not) in a case my case basis. Which they do.

In terms of discussing it with others I think the person or family who have suffered a loss or have a baby with a diagnosis that will result in the death of this baby should choose the terminology most comfortable with them.

In a medical sense I guess there needs to be term that is consistently used and understood by all.

madmomma · 24/10/2015 20:37

Yanbu. And happy birthday to your daughter, whose life is just as precious and meaningful as anyone else's

IceBeing · 24/10/2015 20:39

YANBU OP

Everybody's genetic code is 'incompatible with life' as we are all certain to die at some point.

I don't see the difference between your daughter and anyone else from that point of view, and to have an arbitrary cut off regarding when death might most likely occur in order to determine who should be offered treatment by default is absolutely disgusting.

I support entirely the right of women to have abortions for any reasons. It isn't right or necessary for women to tell each other that they are making the right decision 'because the baby couldn't live anyway'. They can't know that and it does lead to discrimination against babies with the same condition that are carried to term.

DriverSurpriseMe · 24/10/2015 20:42

I don't think the term is generally used to describe the child, it's used to describe the condition

I agree with this. It isn't a value judgement and therefore cannot be discriminatory or disablist.

I also, personally, interpret "incompatible with life" as meaning not likely to survive infancy, as well as possibly birth itself.

But I don't really want to get into a semantic argument in light of your circumstances OP. Wishing you and your daughter well.

fanjoforthemammaries7850 · 24/10/2015 20:42

This is quite a brave thread to start to say the least.

fanjoforthemammaries7850 · 24/10/2015 20:45

I can see it would be painful for you to read that description.

But can also see that people on here might have chosen to terminate believing their child had a condition incompatible with life so this thread might not be easy for them either.

I wish you and your DD all the best, she seems amazing.

MissMarpleCat · 24/10/2015 20:47

What an adorable baby Smile I wish you all well Flowers

fanjoforthemammaries7850 · 24/10/2015 20:47

I have not been in this position. However if

fanjoforthemammaries7850 · 24/10/2015 20:48

Oops. If people described my DD as being unable to have a fulfilling life because she has a disability it would bother me so YANBU.

Everyone is different though

Nonnainglese · 24/10/2015 20:53

'Incompatible with life' to me is very blunt, gives little optimism and meaning unlikely to survive birth, and that's the definition I was taught as a student midwife nearly 40 years ago. The baby was highly likely to die in uterine, intra partum or post partum and certainly within a few hours of birth.

'Life limiting' or 'A life-compromising condition' were used post-delivery and for as long as that child lived.

museumum · 24/10/2015 21:03

I thought "incompatible with life" meant a baby would be born dead or have hours to live only.

I am shocked to hear it might be used for conditions where people could live years or decades!!

dippymootoo · 24/10/2015 21:06

YANBU, it is not a useful term. I have friends with children who are adults with T18 and I met a mum to a gentleman in his 40s with t13. All very compatible with life. My daughter may have only lived for three days with t13 but she certainly made her presence felt during those three wonderful days.

Yes it is important for parents to understand the severity of these conditions and the likelihood of still birth or neonatal death but it is also important to know there is also a little glimmer of hope too. For those of us who decide to continue with pregnancy after the diagnosis, it is important that our feelings are respected too and it isn't assumed we don't understand the severity.

It simply isn't right to describe a living, breathing child as incompatible with life. As a medical term it makes no sense, as demonstrated by previous posts who disagree over its meaning. There are far better descriptive terms.

Your daughter is beautiful OP, happy first month birthday celebrations .

Nigglenaggle · 24/10/2015 21:18

I wish you and your lovely daughter all the best.

I think it's really hard for medical staff. For them it's normal language and they can speak to each other and understand immediately what is meant. It might be interpreted differently by other people, and everyone is likely to have their own interpretation. They can't guess what each persons might be.

I was upset recently by someone referring to my miscarriage to be progressing 'as expected'. It was progressing as expected. It was early, and I already have children. But I didn't want to expect it. For me it was a crushing loss, and I didn't feel the language used reflected it. But she was trying to be sensitive. I was quite calm on the outside and there was no way for her to know how I was feeling.

I think medical staff will only be using that phrase to refer to babies who they don't think can survive outside the womb. I guess if it was 'incompatible with life outside the womb' it would be more accurate. And sometimes, they will be wrong. But they are only human and doing the best they can.

Nigglenaggle · 24/10/2015 21:20

'Life limiting' is better and more accurate, I agree. Maybe it should be swapped.

MaidOfStars · 24/10/2015 21:20

It is a very useful term. It just might not be useful in every context.

BeaufortBelle · 24/10/2015 21:28

MaidofStars. Useful or otherwise it is always helpful for medical staff to remember they are dealing with human beings who might have feelings and who might be vulnerable and very easily hurt when facing probably the worse and most difficult period of their lives. All too often the human side seems to be forgotten. Being kind and considerate should be fundamental part of caring for patients and it shouldn't be negotiable even if staff are tired or have had a bad day.