To think 'incompatible with life' is unacceptable

[TheDisillusionedAnarchist]

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.

I absolutely agree. Hence, not useful in 'every context'.

I'm sorry I can't give an answer to your op but just wanted to say how beautiful your baby girl is.

Happy 1st month birthday xxxxx

Doctors need to describe a condition as precisely as possible. The medical notes can't be written in platitudes. But they're generally quite amenable to an "If I can't do anything about it, I don't want to know" request. I am very sorry your baby is unlikely to live very long. I wish there was more to say.

'Dd's survival with her particular combination of problems was very unlikely even without the trisomy,'

Is her particular combination of problems not due to the trisomy?

I think the trend is very much to encourage terminations when there is no reasonable prospect of survival. It can be hard for parents who want to continue a pregnancy to its natural outcome to do so.

Rumer is beautiful. Strawberry skull, crossed fingers, clenched fists, small lungs and all.

Congratulations on your beautiful baby girl.

I agree with pp who have said that the phrase describes the condition, though with advances in medicine conditions that once would have been considered incompatible with life now can be considered as life-limiting. My daughter who was stillborn last year at 35 weeks had osteogenesis imperfecta type 2, a condition which is and was and will always be incompatible with life. i didn't take issue with the description of her diagnosis then and I don't know because it was accurate. I can understand why you feel it is upsetting because your daughter is an exception. However, for most parents who receive a diagnosis like t18, the condition will be fatal.
I wish you all the best for your daughter, she is beautiful.

Incompatible with life, lethal and their ilk should simply be replaced by full discussion of the individual child's presenting condition and possible outcomes (which may be no baby with this condition has lived longer than x minutes/hours) and parents enabled to make their own informed decisions on whether to continue the pregnancy and if they do on what care to opt for. There is no need for a generic term

Incompatible with life implies futility, that nothing can be done. This attitude is what leads to denial of treatment. Without initial breathing support my daughter would have died. Almost no babies with antenatal t18 or t13 diagnosis in the UK receive this because it is considered futile. This only contributes to the high mortality rate of these conditions and makes 'incompatible with life'a self fulfilling prophecy. Avoiding this language; instead focusing on the possible and likely outcomes of the individual child means parents are instead given real information to base decisions on instead of soundbites and eventually may enable medics to offer individualised care for parents with the full range of options available to them.

That should say don't now, not don't know

my fear is that by focussing on possible outcomes many parents would be given false hope. Medicine can only do so much.

It is a thoughtless phrase Op. Thank you for sharing that beautiful picture of your daughter.

Your little girl is beautiful, congratulations.

I've been in that situation and heard those words said to me by a consultant. I'm fairly sure the exact phrase he said was 'your baby may have a condition that is incompatible with life'. I had so much going round my brain at that point that actually I thought 'incompatible with life' was a fairly clear, concise way of putting it. Not nice or pleasant, no, but something like 'your baby may not make it' or similar would have been too wooly and blurred, I just wanted to know the medical facts and potential outcome.

Everyone is different though, equally I can understand why some people might dislike the phrase. I'm not sure I can think of something that would be better to use though?

Really is it okay to describe people as 'incompatible with life' . What does it even mean?

It means you cannot live with condition, it is a medical term. It is not disableist.

I think the problem is you do not understand the phrase, that is not a reason to not use it.

And even so what could replace it? Your baby will die at birth? And then a baby survives for a day and the parents are given false hope that because their baby didn't die at birth the Drs were wrong?

But people do live with some of these conditions.

I agree with others that 'life limiting' may be more appropriate.

My friend had a pregnancy that had so many medical conditions that she was indeed incompatible with life. She wouldn't have lived outside the womb. Your baby is absolutely beautiful, congratulations, but yabu - it is a medical term.

Life limiting is more used to imply someone likely won't hit 40 years, or adulthood or whatever arbotrary average is dictated by the particular condition. Life has been lived to some degree but not to the expected length. Incompatible with life is a cold but clinically useful shorthand for very short life expectancy with little to noexpectation of leaving hospital. It would not be sensible to replace it with maximum life expectancy or anything else which would give either false hope or a sense of being robbed if the subject dies far short of the estimate.

Your daughter is beautiful, and i'm so sorry you're going through this. Make use of whatever support the hospital is offering.

It is a medical term without an agreed definition. A medical term that has been disputed in the medical literature since the early 2000's. A medical term that is fading from use by medics because it is inaccurate, lacks an agreed meaning and when used to parents can cause offense.

The use of the term for years has enforced the idea that treatment and management of conditions so defined is pointless. It means initial treatment at birth is denied which for trisomy 18 means survival rates at a year are 8% not the 25% they would likely be if treatment was offered. It means that those who defy odds and survive often continue to be denied appropriate care and are asked if their child is for full resuscitation at every routine appointment. It is not a harmless term and it denies informed choice when used instead of full, specific, individualised information.It is fading in the medical profession but the effects linger. It now needs to fade from the rest of the world.

Yanbu - one of the biggest jolts to my way of thinking was coming across the website if a young baby with T13. He was very much alive & had 3 months where he was loved & adored by his family. Since then I have discovered some with T13 or T18 survive years & while many live very short lives it's certainly not an automatic death at birth scenario.,

Much love to you all.

Very good point about appropriate treatments not being given (have had similar with my severely disabled son who has not received treatments or chances because his condition is seen as hopeless).

I do remember the shock I felt at discovering that not all babies with trisomy 13 died within minutes of birth. So yes 'incompatible with life' is terribly misleading.

Does anyone have any thoughts about the application of the term to a genetic disorder that causes 100% miscarriage in the first trimester? We use 'incompatible with life' and 'lethal' to describe this scenario. Is that more acceptable to people, possibly even to the parents involved?

What a beautiful little girl

Ooh, she looks like she's smiling and is all cosy under her blanket. Is she still in hospital op or have you been able to take her home?

bumbleymummy Horrible indeed.

MaidOfStars I think perhaps the term should be left to the medical community and not given to the parents.

If something will 100% cause a miscarriage the parents should be told 'we are truly sorry, your baby won't survive past the first trimester because of X' (insert 'placenta won't form, heart won't etc).

For some people it may help but for others it may not.

It is better to give the facts, X does this and so this will happen if it's 100% miscarriage.

I have no reason for my miscarriage.

That has very much hurt and confused me.

I do not know if knowing my baby will ill and that was the reason would help.

I would have a reason so it may be a comfort especially as I blamed myself a lot and wondered why.

Knowing the reason, if it meant when I next ttc there would be things to help and stop miscarriage- it could help.

But perhaps not.

My close friend have 4 miscarriages, at least one was known to be from a genetic problem and that news did not help the parents grief.

They decided to terminate because they were given the details why their baby would not survive, the actual physical issues which meant the baby would die soon.

Sadly after much heartache over the decision it was taken out of their hands before they could go through with it.

My friend always told me that she would rather have no known.

So different people need different things.

Doctors/nurses etc should use the terms between themselves and just explain the situation, not give labels imo.

And then perhaps some would rather not have the facts and take comfort in a term instead, it is difficult is it not?

I believe medical terms should stay between professionals and the parents should have answers they need and want and as many facts as that is.

"If something will 100% cause a miscarriage the parents should be told 'we are truly sorry, your baby won't survive past the first trimester because of X' (insert 'placenta won't form, heart won't etc)."

I agree with this and also that the 'because of X' should be given only if the parents want that information.

Maid, I know that not everyone agrees on when life begins but having lost babies (and yes, I am going to call them babies here) I, personally, want to acknowledge that they had some kind of life inside me before I lost them so telling me that they were 'incompatible with life' still wouldn't sit right with me even though to some people they weren't alive because they weren't born.

I don't know why they didn't survive either. I don't think it would have made it better or worse to be honest.

It's tricky and in a way I do understand where you are coming from. I have 3 disabled children, one of them shares my genetic mutation which causes various physical problems.

But I did lose another daughter at 22+5 weeks. She had already died and I had to be induced. As a result of chromosomal abnormality she had bilateral renal agenesis, a condition that just isn't survivable.

I do consider that 'incompatible with life' as you just cannot survive without any kidneys or bladder. I'm massively relieved I didn't have to make a decision but if I'd had to I would have had to prevent her suffering at the earliest possible opportunity. Not for my sake - my kids despite their conditions are really happy and as long as I can continue that I'll do whatever is necessary sometimes to my own physical detriment - but for hers.