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.

[ImperialBlether]

You have a beautiful daughter.

I thought it meant that a child wouldn't survive the birth - that doesn't imply in any way that the child isn't incredibly special and wouldn't matter tremendously to their family. If a person does survive, then surely that diagnosis was wrong?

[anothernumberone]

I am so sorry disillusioned about your daughter's condition. I do not feel it would be fair to discuss this with you as it is very personal to you as it is to those who have had different experiences of this situation. But I do agree that treating any person with a disability as having a less valuable life is awful. All the best to you and your daughter.

[Ilikedmyoldusernamebetter]

I understood it to mean very unlikely to be able to survive outside the womb.

I'm sorry you find the wording upsetting, but I do think that is all it means, rather than being a value judgement.

Perhaps the term is too widely used, and the problem comes when it is applied to a baby who does have a chance of survival. Some babies really don't, if the brain or crucial organs have completely failed to form etc.

All the best to you and your lovely baby.

[Cirsium]

I acompletely agree with you OP. To me even the baby I miscarried at 7 weeks had a life, although it is likely there was something fundamentally wrong with him or her that meant they couldn't develop further. People should be far more thoughtful in how they describe others and accepting of those with disabilities as individuals with specific needs just like any other person.

Your DD is beautiful, I've been following your other thread. Nice to see a new picture. Is she home now?

[KittyandTeal]

Quite often conditions are described as incompatible with life.

Before dd2 I knew nothing! I assumed t13 and t18 were incompatible with life conditions. They are not, as pp have said babies with t13 and t18 can be incompatible with life (although it's a horrid term)

My dd2s T18 would have been fatal had we decided to continue (well they were almost positive)

In terms of trisomies it would be helpful if people understood them on a scale if severity, some babies can survive and live to a decent age, some (like my dd) will never be born alive.

Happy first month birthday Rumer. Another beautiful photo.

[CrabbyTheCrabster]

It's a medical term, not a value judgement! It means that the baby won't survive for long (or at all) outside the womb.

[Owllady]

Oh she's a poppet! :)
I think quite alot of medical jargon is offensive Fwiw

[randomsabreuse]

As far as the two anomalies you mention, not at all unreasonable. Clearly the term is inaccurate and dangerously misleading. However I am fairly certain that there are issues that could be defined as not survivable with the current state of medical knowledge which is an entirely different thing.

So many people today would not have been born alive without modern medicine and who is to say with the advances in medical knowledge that more and more injuries, developmental and genetic anomalies will not become as survivable as a c- section for a breech presentation.

Premature birth has become much more survivable than it was as well.

[CruCru]

Sweet girl.

[Sirzy]

I am not going to say you are being unreasonable because it is obviously something very important to you.

However, I think like others have said it is 'just' a medical term and one that really their isn't a nice way to describe but sometimes that news needs to be given to parents so they need some phrase to give the heartbreaking information.

[Cirsium]

It may be a medical term, but it is clearly inaccurate as the OPs DD, very much alive, shows. It is also cold and potentially hurtful to someone dealing with such a diagnosis in pregnancy.

[LoveAndHate]

OP what a gorgeous baby. I have never considered the exact meaning of that phrase but I assumed it benignly meant 'unlikely to survive'. What a miracle your little girl is. What is Trisomy 18 and what does it mean for your family?

[BitchPeas]

I had a tfmr a few years ago due to the baby having anencephaly.

The first thing the sonographer said was 'I'm so sorry but your baby has a brain defect incompatible with life'

And it was, they would have been still born as it was so severe, they had no chance of any kind of life at all. I understand that with the trisomies there are varying levels of severity, but most of the time it means exactly what it says, it's a serious medical condition that there is no cure for and is unmanagble out of a hospital setting 99% of the time.

I put it in the same catogary as chronic condition or life limiting illness, or terminal cancer. Just a description of it illness in terms non medical folk can understand. I'm sorry that this upsets you, it should be dealt with more sensitively I agree as all life, no matter how short or complicated, is precious. Your daughter is beautiful

[pebbletime]

What a beautiful baby!

OP, I am sorry you find the term upsetting.
I know nothing about the conditions you describe but I do know that lots of both medical and 'common language' terms around disability have the potential to be offensive / are used incredibly thoughtlessly.

She is utterly lovely.x

[BertrandRussell]

I honestly don't think it's possible to have this conversation on this thread. I wish you and your beautiful daughter well, OP.

[Vixxfacee]

What a lovely baby.Congratulations

[Catonthematwiththehat]

I haven't really come across the term before so don't have much to add but just wanted to comment on how beautiful your daughter is!

[wonderpants]

Oh what a beautiful baby girl! She is a poppet!

[MrsMolesworth]

Whether or not it's a medical term, it's a negative, dismissive, cold hearted phrase and not one any parent would want to hear used to describe their baby. It's a term that needs rephrasing as it is easy to see how it would be distressing to a new parent.

Your daughter is so cute and beautiful. She has such a sweet, characterful face.

DS2 had 'failure to thrive' (another term I loathe) and I was told he 'didn't want to live - not all babies do.' I have never forgotten being told that by some tosser of a consultant in a bow tie.

He's 13 now, taller than me, has just come back from band practise and is cooking us tea tonight. He's thrived despite many years of a very rocky start and lots of ongoing complicated health problems.

I don't know what Trisomy 18 is or what it means for you and your daughter, but I hope you enjoy every day of her life and your life with her, for as long as you can.

[Iggi999]

It has been comforting to me to know that one baby I miscarried had a trisomy "incompatible with life" as I always felt that meant there was nothing I could have done differently, I couldn't have made a difference to the outcome.

[AloraRyger]

It is a medical term. There are conditions where there is very, very little chance of a meaningful life for a baby and they're not limited to the main trisomies ie T13, T18 and T21. It's not a judgement of the value of their little lives and I'm absolutely sure that medical staff don't want to cause any additional pain to families.

Your daughter is absolutely beautiful, she really is and though I haven't commented before, I've been following your other thread and I'm so pleased that she's doing so well.

My eldest daughter was beautiful too but the condition she was born with meant that although she lived briefly in my arms, she wouldn't have had much of a life beyond a ventilator and an incubator. The condition she had is deemed incompatible with life when it is as severe as it was - little to no brain division and tissue, no sight, hearing, sense of smell or touch, facial abnormalities and hydrocephalus - imho, it isn't disablist to describe a condition like that is incompatible with life because well, it is.

[acquiescence]

I think it is a helpful and clear medical term when and if used appropriately. It is honest and to the point and gives a prospective parent an understanding that a fetus is unlikely to survive, if this is the case. If it is being used when a baby can survive then I guess it is not helpful and I can understand how it seems like a negative term to use about a child who has survived.

[TheStripyGruffalo]

BitchPeas why would you put chronic conditions in the same group as cancer? Chronic conditions are long lasting conditions but they aren't necessarily anywhere as terrible as cancer.

[Branleuse]

its a medical term, and not meant to sound cuddly. Im happy for you and your sweet daughter that she is defying the odds, but I dont think that means we need to change terminology to something less clear and unrealistic