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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:
Ripeningapples · 24/10/2015 15:35

I don't know. My second son died after a few hours. We were told at the 20 week scan that his serious congenital heart malformation was probably incompatible with life. The consultant we saw later that week explained that if he got to 32 weeks, if his lungs were relatively well developed, if he survived to about four months, if a heart lung transplant became available then he had a tiny chance of survival. Hope kept me going. Even when he was taken away I imagined he might miraculously wake and be well. 19 years later he is still my son, always in my heart. His condition was incompatible not him and the use of the term didn't upset me. The midwife who called him "It" before he was born did though.

Eventually it stopped hurting but only because a little bit of me turned to numbness. My second son was perfect, except for his heart. I think of him every single day. It took me many years to stop thinking of the woman who called him "It". I understand how you feel.

BreeVDKamp · 24/10/2015 15:36

That little smile!

PurpleDaisies · 24/10/2015 15:40

She's adorable. Is that an attic24 crochet ripple blanket? I'm making one at the moment.

Flowers ripening. "It"is a horrendous way to describe a little person.

TheoriginalLEM · 24/10/2015 15:42

Your little girl is just soooo cute :) You must be so proud.

It is a horrible term isn't it, but then how do you say it? when a condition really does mean that a baby is unlikely to survivie - its all pants really isn't it.

Thestripygruffullo There are many chronic conditions that outstrip cancer in terms of shitness, but its really not a competition.

overthemill · 24/10/2015 15:42

It's a medical term which obviously is very painful to parents/ family but which accurately describes what it means: a fetal anomaly diagnosed before birth that will with reasonable certainty result in death of the unborn child within three months. Fetal anomaly incompatible with life does not include conditions which can be treated

It's very painful for those affected by it and I can understand that you feel it's a judgement against your baby but it isn't. It means, very sadly, that babies with these conditions are unlikely to live beyond three months. There's a Facebook campaign isn't there which I believe is orchestrated by the antiabortion movement.

It doesn't mean your own baby is not loved or wanted or amazing.

Coffeethrowtrampbitch · 24/10/2015 15:44

I agree with the op it is an unhelpful and hurtful phrase.

My sister has spina bifida, and I found some medical professionals incredibly offensive as they assumed if my baby had this condition I would automatically terminate. My sister has a great quality of life, two kids, a post grad, full time job. My friend's sister with SB has learning difficulties, is in a wheelchair and is incontinent, she lives in a residential home as her family members can't care for her full time.

I would have wanted to know a hell of a lot more than 'your child has spina bifida' before I made the decision to terminate. There are many different prognoses for the same conditions, and I think the phrase 'incompatible with life' should be used with more care.

ThatsNotMyRabbit · 24/10/2015 15:45

Your DD is beautiful and I can understand where you're coming from but YABU. What phrase SHOULD be used instead in your opinion?

manicinsomniac · 24/10/2015 15:47

Your daughter is beautiful and I am beyond delighted that the doctors were wrong about her.

But, in the gentlest way possible, I think YABU. Most of the time the doctors aren't wrong when they say this. They literally mean the child cannot survive for long outside the womb. The child is not incompatible with life but, tragically, the condition they have usually is. I think I would prefer to hear something like that than something blunt like 'your child will die'. I do believe it's supposed to be sympathetic terminology, though I appreciate it's hard to see it as such when faced with it.

Children can and do defy the doctor's predictions for them. But that's the case with lots of things. Some people are told they have 3 months to live with their terminal cancer and are still going strong 5 years later. Some people are told that they will never walk again after an accident but they do. It doesn't change the fact that the doctors' diagnoses are right most of the time.

I'm not convinced they should need to change their terminology because of the few who they are wrong about.

grumpysquash · 24/10/2015 15:51

My sister's baby also had trisomy 18 and it was indeed incompatible with life.

I think the medical profession don't always take the time to properly explain genetic conditions, in particular that everyone with a condition will not have the same issues or severity.

Congratulations on your DD - she is adorable :)

Original poster
TheDisillusionedAnarchist · 24/10/2015 15:55

I don't have a problem with low likelihood of survival, extremely high risk of stillbirth or unlikely to survive after birth. I lived and live with that. I had the undertaker's number on my birth plan.

Incompatible with life however is outdated (not one of our medical team including a consultant who was strongly anti treatment has ever used it.) and offensive and like other outdated and offensive medical terms needs to go. Why is it okay to use it on here and not other similarly offensive terms.

Also incompatible with life when used with conditions like my daughter's leads to denial of treatment and a self fulfilling prophecy when denial of treatment leads to death

OP posts:
KittyandTeal · 24/10/2015 15:56

For those of you asking;

Trisomy 18 (as with all 'trisomies) means that a baby has 2 sets of, in this case chromosome 18, rather than 2. Depending on the chromosome that has been over duplicated it has varying effect. For T13 and T18, that present in very similar ways the 'abnormalities' (for want of a nicer words) vary but often include heart and brain defects.

In the case of my dd she had parts of her brain missing, 3 holes in her heart, her hands and arms were locked and never moved, her chin was overly small and she had a 'strawberry' shaped head which I think is linked to the brain issues.

In terms of my dd the parts of her brain that were afftected where what meant she would not survive, she would never have been able to breath on her own (or would 'forget') and she would have most likely suffered multiple heat failures. These are the sorts of symptoms that doctors are talking about when they use the term.

LoveAnchor · 24/10/2015 15:58

TheDisillusionedAnarchist, what a beautiful baby! Flowers

Ohbehave1 · 24/10/2015 16:01

It is no reflection on the person it is aimed at. It is simply a medical term. And as such, it needs to be factual. Understood. And also needs to allow the medical staff some chance at being professional when delivering news you don't want to hear. They don't like having to say it so to be factual and accurate are the only fair way they can cover it.

SunshineAndShadows · 24/10/2015 16:05

My nephew had trisomy 18. As PP have said it is the condition, not the child that is incompatible with life. It does not mean that the child is not wanted or valued, but it is a phrase that allows parents in a horrendously difficult situation to make a decision about whether to continue with a pregnancy or not. It allowed our family to come to terms with a very difficult termination, knowing that our LO would never have experienced a meaningful quality of life, if any life at all.

Op I'm glad that your DD is defying the odds but I cannot think of an equivalent appropriate term to allow a family to realistically weigh up their options

Flowers
KittyandTeal · 24/10/2015 16:08

I think one term that has been used (and is possibly more accurate) is 'lethal diagnosis' which I think disillusioned prefers if I am right?

Iammad · 24/10/2015 16:09

Your dd is absolutely beautiful, you can not help the way you feel about that terminology and for that yanbu!

SantasLittleMonkeyButler · 24/10/2015 16:12

You have a beautiful daughter OP. Congratulations Flowers.

I also took the phrase to mean that a baby would not survive his or her birth. I can only imagine how offensive it must be to hear your own child's medical condition described this way.

YANBU.

HopefulAnxiety · 24/10/2015 16:16

Firstly OP, your daughter is lovely and congratulations on getting so far.

I don't have experience with this term personally, but medical terminology can be ableist - and it can and does change, eg mongoloid or spastic. Medical terminology is not automatically appropriate, sometimes it does need changing.

Original poster
TheDisillusionedAnarchist · 24/10/2015 16:19

For us medical staff never used it. Like us I imagine they consider it outdated and offensive. It is only on here I've seen it used. I understand it takes time to change language use but perhaps it could start today

Kitty described T18 accurately. DD has some brain differences in her cerebellum, a complex heart defect (ventricular asymmetry, VSD, suspected coarctation of the aorta, retrograde blood flow and now high pulmonary vascular resistance and PDA), Diaphragmatic eventration and pulmonary Hypoplasia. She also has a strawberry shaped skull, crossed fingers, clenched fists and mild rocker bottom feet.

When we got the diagnosis I too thought it was lethal or incompatible with life, I'd used these terms but after reading on T18 and experiencing a horrendous fight to access appropriate treatment because of the custom and practice in the UK to deny it, I now think the terms facilitate discrimination. Avoiding using these terms does not make any decision parents make invalid. Termination is a valid choice, palliative care is often a valid choice and treatment is also a valid choice incompatible with life as a concept is used to deny parents who opt for treatment their choice. It needs to go.

OP posts:
KittyandTeal · 24/10/2015 16:25

Actually thinking about its think I picked up the phrase online. Thinking about it the medical staff described dds condition and 'unsurvivable'.

I agree, I think alternative terms need to be used as long as everyone using the phase accepts that all choices around the diagnosis are valid.

rivierliedje · 24/10/2015 16:29

Is it possible Disillusioned that the medical staff never used the term with you because they thought your child did have a chance of survival. Not everyone has exactely the same symptoms. It they thought she could survive, obviously they wouldn't use the term because then it would be wrong. Also I'd be really surprised if medical staff used the term after a child was born who was doing reasonably well.

But there really are conditions where survival is incredibly unlikely and I don't know how else you would like it described. With the best will in the world I can't see the discription as ableist, it is usually just fact, horrible terrible fact.

Chottie · 24/10/2015 16:32

OP - just to say your LO is absolutely gorgeous xx

MyCircusMyMonkeys · 24/10/2015 16:39

I don't think the term is generally used to describe the child, it's used to describe the condition. And some conditions are incompatible with life, to the extent of our current medical knowledge.

Original poster
TheDisillusionedAnarchist · 24/10/2015 16:42

No they definitely didn't think she had a chance of survival and to be honest neither did we, we fought for treatment expecting death. We had a grave not a cot.

Dd's survival with her particular combination of problems was very unlikely even without the trisomy, we were incredibly fortunate to have this outcome and without treatment Dd would have died within hours. Incompatible with life was avoided only because it is outdated and inaccurate. Nobody not even 2nd and 3rd opinions, not even the most anti treatment doctors ever used it.

OP posts:
Nonnainglese · 24/10/2015 16:43

Happy One Month Birthday Rumer, a beautiful little one x