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.

When medical staff used the term to us they meant exactly what they said. They did not mean 'low chance of survival' or 'born with disabilities' they meant 'will not survive outside the womb, and will probably not survive throughout pregnancy '. I have not seen it used to mean anything else, and we didn't find it offensive. There really is no 'less negative' way to talk of the death of an unborn baby.

As it happened, the amino showed that we were actually dealing with 'congenital abnormality' and the phrase was never used again .

OP, your baby is lovely, congratulations .

Dr's used the term with me and I don't really mind it. They did then go on to be more descriptive, giving me stats, how long the oldest baby had survived with T18 at that hospital. My baby's brain had parts missing, heart not formed correctly, severe Hydrocephalus etc I did opt for a termination in the end.

OP That is one cute baby hope you all have a wonderful day and Happy Birthday to her.

I don't think it really matters if they change the words, the message is just the same. Not sure that it would be any nicer to say "not viable" or "lethal " or "extremely poor quality of life" etc.

I think that they are just trying to make it clear.

She's lovely and I wish you well.

What a cutie pie.

I think there have been some thoughtful posts on this thread. I understand why the term seems unacceptable to you but I agree with the poster earlier who suggested the term applies to the medical condition and not the 'child'

Your daughter is beautiful. :) YANBU and agree with what you are saying about that type of terminology 'ruling out' options for treatment.

I don't really know anything about the term tbh. I just wanted to say that your baby is lovely.

I understand what you're saying. Congratulations on an absolutely beautiful daughter, I wish you all the best

Your little girl is beautiful

Op your baby is beautiful

Just wanted to say that your daughter is absolutely adorable.

I have heard people who had a child with genetic issues and died shortly after birth describe the condition as 'incompatible with life'

Because the term has been used by people going through similar things than you (one had a child who died within a couple of days, the other within 2 weeks) , I would have never associated that expression with a negative term. Just one that meant children with these genetic defects/whatever issue is going on have a condition that means they will die shortly after birth.

And YY to the fact it's the condition that is incompatible with life rather than the child.

I don't think it's a bad description to use.

Breaking the news to someone that their baby will die before, during, or soon after birth- there's no way to put it "nicely".

Incompatible with life I think covers it, the meaning is clear, and is about as sensitive as you can get.

How else would you say it?

What a gorgeous little girl you have. :) love her name too. Happy one month birthday baby Rumer. for you.

YANBU to dislike that term. I think it's outdated and people need to consider wider aspects.

Your baby is beautiful.

I followed your other thread in tears, but in the kindest way YABU. My DS had a condition that was incompatible with life and on the day we were told, and for a long time after that is what I needed to hear. Desperately painful as it was.

Although I pleaded internally for a different my DS was never going to survive and understanding that before his birth helped.

I wish you and your lovely dd all the best.

'Incompatible with life' is a term I use quite a lot (I am a scientist who studies genetic disorders). It is used academically quite widely; of course, that doesn't mean it should be used with prospective parents (although I have heard many consultants use it in meetings etc).

In some cases, 'incompatible with life' means just that. And I don't think I've ever used it for Trisomy 18. But I have used it for other genetic disorders where, for example, there is 100% miscarriage in the first trimester. That is what 'incompatible with life' means, as far as I'm concerned.

I hope for the best possible outcomes for you and your daughter. I really should have said that first

YY to others who have said it's descriptive of the disorder, not the person.

But Micah, saying that a living person has a condition that is 'incompatible with life' kind of takes away from the fact that they are actually alive. It suggests that the life they have isn't really life and therefore isn't as worthwhile as someone else's without this condition.

What a beautiful baby.

bumbley and therefore
This is YOUR interpretation. There is no logical progression to the conclusion you reach.