Active Euthanasia for Disabled Babies Being Considered

Thirty three years ago on November 5th 1973, I was born in Frimley Park Hospital. It was immediately obvious that I was disabled and my mother was advised on more than one occasion to leave me at the hospital and forget about me. As is very common, doctors told my mother a series of negative predictions about my future. Apparently, I would be blind, deaf, have epilepsy, never be able to talk or communicate. They even used the classic ‘he’ll be a cabbage’ line.

So why am I telling you all this? Last Sunday was my thirty third birthday and flicking through the papers I was horrified but unfortunately not that surprised to read that the Royal College of Obstetricians and Gynaecology is calling on the health profession to consider permitting the euthanasia of seriously disabled newborn babies. Apparently 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.“A very disabled child can mean a disabled family,” the report says.

One contributor to the Sunday Times article, John Harris, a member of the government’s Human Genetics Commission and professor of bioethics at Manchester University argued “We can terminate for serious foetal abnormality up to term but cannot kill a newborn. What do people think has happened in the passage down the birth canal to make it okay to kill the foetus at one end of the birth canal but not at the other?”  The saying ‘two wrongs don’t make a right’ springs to mind. There seems to be very little appreciation amongst the medical profession that people with impairments can enjoy a good quality of life and contribute to the richness of the society in which we live.

The Nuffield Council of Bioethics are publishing their report ‘Critical care decisions in fetal and neonatal medicine: ethical issues’ on the 16th November and it will be interesting to see whether the opinions of Royal College of Obstetricians and Gynaecology are echoed in the report. Unfortunately I am unable to attend the launch of the report however as always I’ll keep you posted through the blog.

In 1973, I had a chance to prove the doctors wrong. In 2006, disabled babies may no longer be given that chance.

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12 thoughts on “Active Euthanasia for Disabled Babies Being Considered

  1. How I heartily agree with you the world would be a much poorer place without the diversity of human beings. Interestingly I was at a conference on Wednesday and someone said that they should treat people with learning disabilities and mental health problems as real people. I have a mental health problem and it is my aspiration to become a real person, trouble is I dont know how to go about it!!!!

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  2. Well…what an ignorant and idiotic organisation that is..i did’nt realise Hitler had relatives/fans working for such influential organisations in the UK!!! All that the doctors advised to Robert’s family on his birth..thank god it never got any further than “advice”, he is a decent guy, does a good service to other disabled people, and has an uncanny knack of putting a smile on someone’s face, bet the same cannot be said for the moron who thought up this ludicrous thing. I would like to say this tho…if ever you face needing advice on support for disabled people, give Robert a call!!!!

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  3. I was the first of three children, born at 23 weeks weighing in at less than 2lb; my parents were Irish Catholics so I was christened soon after the delivery as I was not expected to survive. Five months later I left hospital, and two years after that was diagnosed with CP at which point my parents were informed that I would not achieve much in life – and yes I believe the cabbage term was used!
    Twenty five years later after the birth of my first child I had a miscarriage and was informed “not to worry my miscarriage was probably nature’s way of preventing me from having a disabled baby”. Recently my sons girlfriend was informed that if tests proved positive she could have a ‘Downs’ baby terminated.
    I do not have the answers to some of the complex emotional practicalities or questions such issues bring and my experience of being a parent have taught me that nothing in life can prepare you for motherhood. After all I was not expected to survive nor have children! So I just got on with it, and learnt as I went along and I’m sure like most mothers can think of things I would have done differently.
    What I do know is that assumptions based on fear and prejudice continues to be made, have lasting effect and achieve nothing apart from foster negativity and pain at a time when support and helpful thinking are essential.
    On the other hand if the medical profession could only step back from concerns about dependency on resources and the drain on public services, they might find it easier to appreciate the wonder of all human life. They would be able to give better support to their patients and even invest in the belief that diversity and difference need to be celebrated nurtured and accepted.

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  4. I Agree with you on this as i too have epilepsy and have lived with it for 18 years and so far have made massive strives in life. My story is i was born on april 29 1988 and was diagnosed with epilepsy at the age of 2 and had short and long term memory loss for many years but still mannaged to learn many things but at a slower rate that other children and am now a successfull computer engineer. from the time i was diagnosed with epilepsy i was having between 2 and 4 fits a month but over the last 3 years have been able to control my epilepsy and have decressed it to 2 fits a year and now im 18 and am enjoying life. But i feel i am loosing the fight and that the epilepsy is gaining back it control over me.

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  5. Well, I found this interesting to read. I am actually nearly totally blind myself, and I certainly wouldn’t consider having any children of mine terminated if I discovered they were going to be blind as well. However, whilst I do have a lot of respect for people with other, sometimes more serious disabilities than my own, I am not going to dismiss this report out of hand.

    I don’t think that the drain on the public purse is important at all, and I strongly believe that if parents wish to continue with the birth and up-bringing of their child, then they should be allowed to do so without any pressure to do otherwise. However, the report is correct in mentioning the struggles that parents of disabled children will inevitably face, and I do feel that this is a very significant issue indeed.

    If my unborn child or new bourn was diagnosed with a very very severe disability, I would consider the option of Euthanasia if it was available. I would expect to get balanced advice of course, and I would expect accurate evidence of what kinds of lives other people with the same disability as my child faces a life with to be presented to me so that I could make an assessment as to the quality of life that could reasonably be expected.

    Now I know there are people out there with very severe disabilities who do amazing things and have a quality of life that could never have been anticipated. However, I am also aware that there are many more who do not. Unfortunately, those who lead a good life are the exception rather than the rule, and so I do believe this report may have a point. I do not think you should ever be asked to consider the drain on public resources if you decide to keep your child, or be pushed in to doing something you might regret later, but I do believe that the choice should be there.

    I especially think that choice should be there for parents who are disabled themselves and who would have more problems than non-disabled parents in bringing up disabled children. I am only talking about children with very very severe disabilities of course, not blindness or deafness or Epilepsy, but really really major ones like total body paraplegia combined with severe mental health problems etc.

    Steven Hawkins has almost total paralysis, but his mind is outstanding. Because of his complete brilliance, he has been given far more than most with similar disabilities, as the World could not do without his intellect. But what would happen if he had an IQ of less than 70 and the same health issues? Do you really think he would receive the same help?

    I have a friend who is paralysed apart from one arm, and she is also blind. She is very intelligent, not Mr. Hawkins level, but still intelligent with a masters degree, and I’m sure she will do well, or at least, could do well. However, she is under the home carers scheme, unable to even go out to the shops without being totally dependant on her carers or other people. What kind of a life is that? If she had been mentally disabled as well though, she really wouldn’t have much of a life at all.

    And what about parents of severely disabled children? No one can deny that the report speaks the truth when it proclaims that parents with chronically disabled children will face many struggles and hardship. Either that, or the children will wind up being neglected because the parents are not prepared to endure more suffering than absolutely necessary in order to turn an existence in to a life. Parents can do enough to ensure that their child exists at least, whilst enjoying the same freedoms that parents of perfectly healthy children would enjoy, but to give that child the highest quality of life possible requires inordinately more input from the parents, money which they very likely do not have to pay for expensive treatments, hours of therapy, 24 hour care etc.

    If the state decides to take the child away from the parents who simply do not appear to be able to cope, or even look as though they’re trying, the situation doesn’t really get better. State care of children is bad enough as it is! State care of children with acute disabilities is a complete joke!

    In conclusion, I would suggest that there is no right or wrong answer to this issue. It is one of life’s many conundrums and cannot be dealt with in a little report or two. I do believe that the choice should be there, provided carefully balanced advice programmes and support mechanisms exist to back it up regardless of what parents choose. I also believe that as advances in genetic modification of unborn foetuses improve, parents should be strongly advised to take necessary steps to have such modifications done to avoid heartbreak and hardship in the future. Some people do not even agree with genetic tinkering, but I think if I was told that my son would never walk, never play ball, never go on a date, never sit in front of a computer and use it as I am doing now, never talk, have to eat food through a straw for all his life unless I authorised the necessary gene therapy, I would almost certainly do it.

    Playing God? I don’t think so! If you think that gene therapy is tantamount to playing God, then you would have to believe that taking Epilem to prevent epileptic fits is too. You were born with something different in your brain that happens to cause convulsions, therefore God intended you to have convulsions, and preventing them from happening is against the Will of God. Nonsense of course! So if one can take Epilem to prevent convulsions, why not gene therapy before the child is even born to correct the problem itself? If my children are shown to be carrying correctible genetic disorders that will make them visually impaired, I would have gene therapy carried out immediately! OK, as a blind person, I haven’t had a bad life, I run my own company now, work, have my own home etc, but I still would rather have been sighted on balance. I know I’d be pretty mad if I found out that my parents could have done something about my sight problem when they found out mum was pregnant but didn’t take any action.

    Genetic treatments should always be considered before any kind of termination, before or after birth.

    Thanks for reading.

    Matt

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  6. I have read all sorts of stuff regarding disabled individuals and am partially blind myself… I have a child aand although he is not blind I WOULD NOT EVER risk my disability on another human being… society,although advanced is not all that willing to accept the diversiy of disabled individuals…

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  7. Pingback: Staunch allies (whether you like it or not) » transabled.org

  8. Hi I am a mother of a 17 year old learning disabled daughter who is over 29 weeks pregnant and has just been told today that she is going to have a mentally retarded baby and is being shipped off to another hospital to another set of doctors and now must decide to keep going with the pregnancy or not she wants to have him but wants a normal baby and doesn’t understand why she cant just have a normal baby or why people cant tell her what he will be like i have no idea how to help her or tell her what will happen i cant make this decision for her anyone with any thoughts or groups that might help after she makes a decision please let us know 34 year old grandma to be ?

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  9. I have epilepsy and I am 45 years old and I have been doing some research on the medications that I have been taking for years and I have found out that one of them is used for euthasia? What is going on? Why was I not informed? Oh course I now know but, now I can not even remember the good times in my life thanks to this drug. Phenobarbital. Plus I was always treated like I was a drug addict when I was not. I have always been treated as If I were some crazy person with bi polar disorder when in actuality I do not have bi polar disorder I have epilepsy and I am being drugged with medication that is used with assisted suicide?
    what is up with this?
    This is so unethical!

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  10. I am a 68 years old woman and I must say that I’m OK. I was born with bilateral club feet (more or less corrected with surgery) and no left hand. At times it’s been very painful, and I have wished I wasn’t born, but I managed to have a full life, 2 children, 4 grandchildren and 2 husbands. I’m a widdow now. I have a PhD in Linguistics and another PhD in life as a disabled citizen living in Rio de Janeiro, not a very kind place for the disabled.
    Would I wish to be born again like I am? I don’t think so. It just hurts and it takes a lot of energy and courage to lead a normal life, with any serious disability (and mine isn’t that serious). But I would not terminate a life that is viable, even if it’s a difficult one, because small and big miracles can happen. People miracles.
    Thank you for reading this,
    Lucia

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  11. i really appreciate this article…

    but i do believe that killing… or lets just say “merciful killing” is a solution to a depression of friends of a certain person suffeing from a paralysis or something…

    but i do believe in the right to live… besides, we are owned by God, these sufferings are may be just a punishment..
    but it doesn’t mean that we can already deprive a person who’s suffering from a severe illness…

    it is not appropriate to kill a person. no one has the right of taking any persons’s life…

    in my part…
    i strongly disagree in EUTHANASIA…
    everybody knows that all of us will soon terminate,
    but it is better to wait for our time…

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  12. This is what all of you need to realize. We all say, ok, this is the line, on this side we should protect a life, but on this other side, these lives aren’t worth living. So we have a blind man stating that if a person has serious disabilites, like paralysis and an IQ of 70, then we should allow euthasia of that person. But what Matt doesn’t realize is that there are MANY peopel who think the line should be at blindness. There are people who think the line should be at severe depression. There are people who think my son with Down Syndrome, who has a good quality of life and is gnerally happoy, should have been euthanized. The reality is, WE HUMANS LACK THE WISDOM to make these decisions. Once a society starts deciding that it is ok to kill some peopel due to a perceived poor “quality of life” or due to social cost, then the list of people deemed “okay to euthanize” grows. I know very reasonalbe, otherwise rational people who fervently beleive all disabled people would be better off dead. So don’t debate and attempt to find a fine line–the line will be moved–and someday, you or someone you love will be on the wrong side of it.

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