Doctors: let us kill disabled babies

[ALoudFireworkScaredMyBadMouse]

Joy Delhanty, professor of human genetics at University College London, said: ?I would support these views. I think it is morally wrong to strive to keep alive babies that are then going to suffer many months or years of very ill health.?

What do you think?

I think to give parents the choice of whether their child lives or dies would place an incredible burden on them. Whatever they chose, that decision could haunt them forever. How many conditions are there that truly make death preferable to life?

But I suppose it's nothing new, either. My mum told me that when she was a child and most babies were born at home, it wasn't uncommon for newborn disabled babies to be smothered. The mw would put a soft pillow in the cot and the baby laid face down on it. I was really shocked when she told me this. But in some ways it was understandable back then, because they had no effective birth control, much of the country was poverty-stricken and there was no NHS at all, however lacking it is today.

There was an MNer who was recently offered a termination when her dd was diagnosed at 30+ weeks with TALIPES.

I found that very shocking.

I do think it's a bit ironic though, that we now terminate for reasons of disability but then keep smaller and smaller pre-term babies alive - and of course, a lot of them are going to end up with severe physical problems.

I think it is a very important debate.

I think this:

"The college is arguing that ?active euthanasia? should be considered for the overall good of families, to spare parents the emotional burden and financial hardship of bringing up the sickest babies."

is patronising bullshit.

There are many very severely disabled children at ds1's school- very very disabled (it's a PMLD school). I have yet to meet a parent who wishes their child hadn't lived. I have yet to meet a parent who doesn't fight to keep their very sick child alive. Emotional burden? By whose definition?

what the fuck happened to "first do no harm?"

Sorry but the whole article has made me livid. Droning on aboiut financial hardship- sort bloody services out then - we'd be in a lot less debt if a) we hadn't had to pay for every service our son has received and b) there was some form of childcare available locally that would allow me to work more easily. Surely sorting out services is preferable to killing the undesirables.

its a tough one this , whilst i wouldnt condone doctors ending the lives of seriousley ill babies carte blanche ,i can understand the reason this debate occurs . There are more and more very premature children being born and as a result more critically ill babies being cared for around the country,unfortunately the resources to care for these babies hasnt increased at the same rate. If a baby needs ventilating but has no chance of life without that ventilation,then is right to continue with care ? whilst at the same time depriving anothe r ill child who may only need ventilation for a short time ? It really is a very emotive issue but surely couldnt the medical profession organise a system similar to that of adult life support where there are very strict guildlines in place when it comes to pronouncing someone brain dead ? Hopefully medical science will catch up and treatment for severly disabled or premature infants will continue to improve

My concern- apart from the line drawing and just general ethics of the notion of certain groups being 'disposable lives'- is that medical science is imperfect. We were urged to terminate DS3 becuase of Downs which he doesn't even have and we both felt we were put under severe pressure to do that.

PS used to work with a very severely disabled girl with CP (vaccine damage), her Mum had passed on and Dad had given up a great career to move to a council house near services they preferred and raise her up. The notion that the child can get nothing out of these relationships- there's a bond in these situations between parent (or carer I am sure) and child that redefines love entirely, it's completely visible on both sides and is a truly life enriching experience. yet this girl will never speak or smile, it's all in the eyes.

I do perhaps see that at birth decisions can be made carefully about vetilation etc- but theya lready are, there's no real question of that, I've seen that happen too.

even if it was down to parental choice, it would probably quickly result in having a disabled child becoming a 'lifestyle choice', rather than One Of Those Things. And then someone will come along and argue that parents who choose not to have their newborn killed should be responsible for the medical costs incurred, or should not be eligible for benefits because it's a situation they could have avoided...

Plus, lots of parents might make a decision they would come to regret bitterly once they haze clears. Finding out your newborn has a disability and serious health problems is really bewildering and obviously extremely upsetting, and does not put you in the right state of mind for making life or death decisions.

Saw that, but haven't had a chance to read it.

I did see the special about Johnny Kennedy, The Boy Whose Skin Fell Off. He's the one who had EB.

He did say, in that documentary, that he'd not have a child w/EB if it were up to him.

Genetic screening at a very young gestational age for disabilities is not a new thing, but not everyone will want to take the option and articles like this deny the value that there is in a disabled child.

9Expat, fwiw my Psychology Professor is good friends with a sufferer of the same disease that chap had and met Johnny on several occasions, it is his firm belief that johnny was clinically depressed and he says it was known that he needed far more help with skin management than he received.)

Hmmm. I'd be clinically depressed if I had to live like he did, tbh. I'd be more than that.

For being clinically depressed, he died of natural causes.

I'd have topped myself long before I reached 36.

Message withdrawn

My dd does have profound learning difficulties. I can wholeheartedly say that I have never wished that she wasn't part of my life, quite the opposite in fact. We are lucky in the sense that she doesn't suffer from pain, so I can't comment from that perspective. However the concept of applying a value to a child's life is appaulling, especially when it seems to have such a strong leaning towards babies/ children with learning difficulties. So much for diversity and valuing all life.

It reminds me actually of a quote (apologies, it is a bit nauseous, maybe I should archive it to the Poetry section):

'I asked God to make my disabled child whole. And God said "No".
He said her spirit was whole, her body was only temporary.'

Now I'm not religious, but I agree totally with the sentiment of the second sentence. The essence of what makes my dd my dd is no different than for any other child.

Hmmm..I see the thread title is lifted from the Sunday Times front page headline. Time to stick to The Observer in the future I think.

This reminds me a bit of that telegraph article by Andrew Sparrow linked to in SN where he says:

"In the past, when I had read about parents saying that they loved their disabled child as much as their "normal" children, I used to think that, although it was broadly true, there was probably some tacit way in which the "normal" ones took precedence. I am ashamed to have to admit this because I realise now that I was totally wrong."

Unfortunately people often don't realise that-the people behind these proposals don't appear to understand that- hence they seem to think you can kill a baby at birth and somehow it doesn't matter.

What changed his mind Jimjams? Did he have a child with SN?

You guessed it chonky!

juast found the article..v.g

It also seems a bit scary from my point of view because you hear stories like Peachbobbingparty's all the time. My cousin's baby was diagnosed with a tumor like growth in her brain. They said she would never live more than a few minutes and strongly urged her to terminate. She now has a lovely daughter who was born perfectly healthy with no defect at all. These doctors were willing to throw this baby's life away. Do we want to put these judgements in their hands?

Agreed, another friend was told her baby probably ahd Edwards, certainly ahd serius kidney / organ damage and that she could wait for the results but they'd urge an immediate termination, her Dh wanted to but she didn't have a babysitter that afternoon- that simple. After they decided to wait, they found it wasn't Edwards but the organ damage was stilla factor.

baby born healthy required a minor op on hands and has one ill kidney, one eprfectly functioning.

It's the whole judging which lives are worthy that really gets to me.

I know a very disabled woman of my age. Seriously, severely, profoundly disabled, she was not expected to survive infancy. When she was 8 she was very ill, in hospital, not expected to survive, the doctors wanted to withdraw treatment. Apparently her mother screamed at them "don't you dare let my baby die, you get in there and treat her", apparently she lost it. Anyway they did treat her, and almost 30 years later she's still alive, still profoundly disabled, still living at her parents and bringing them a great deal of happiness. How dare someone decide that she's going to be an "emotional burden" at birth and kill her (and she would have fitted the criteria believe me).

I don't understand why people don't realise that a disabled life- even a profoundly disabled life, has as much right to life as a non-disabled one- and can bring as much happiness. What on earth would the response be if it was suggested that a "normal" baby was killed at birth because they were likely to become a drug addict or something- oh where is that link?- oh yes here prenatal diagnosis of normalism

So who would be making the ultimate decision then on whether a baby fits the criteria for such a ?mercy killing?. The doctors? The parents? Surely if it were the parents then each would have their own views on what constitutes severely disabled? After all, you can terminate a pregnancy on the basis of a cleft lip, so could you kill a newborn for the same reason? Or would it be a postcode lottery like everything else in the nhs, this health authority doesn?t fund mercy killings so if you?re afraid of having a disabled baby you might wanna consider moving to the health authority up the road because they?ll kill your baby for you if you feel it might be a burden and turn your family into a ?disabled family?.

Wow. You know, there are no guarantees in life. Just b/c your child - or you, for that matter - are born healthy doesn't exempt something catastrophic from going wrong and their becoming disabled.

So what then?

Do you just everyone who winds up disabled - at birth or through illness or accident b/c that's what's 'best'?

My best friend has a brother who was 'normal' till 19. He was queued for a nightclub when someone drove a car into the crowd.

He is 44 now, w/the physical and mental capacity of a 4-year-old.

If we start living our lives defined by how we are at birth or before we're born, what does that say about the values of our society?

Not anything good.

Well, I'm disabled and in a lot of pain day to day. I'm also 30. Are the doctors going to come at me with the morphine overdose, or are they only going to pop off the disabled people too young or incapacitated to resist them?

/livid

Speaking as the daughter of a mother with MS who has a DNR living will and who is looking at the possiblity of euthanasia I can see both sides of the coin on the euthanasia debate and I suppose I am pro-euthanasia. However, I find the way abortion is offered to pregnant women for various 'disabilities' sickening. I refused to have the amniocentisis because I wanted my duaghter no matter what. Downs would have been nothing compared with losing her. As for killing severely disabled babies - the safeguards would have to be so restrictive to prevent needless 'mercy' killings. We trust our doctors less and less (Southall and Shipman spring to mind) and the authorities seem to want less parental autonomy too. It is very worrying.