Ashley Treatment is making waves in medicine. A young girl with static encephalopathy (severe brain damage) has undergone an operation to stunt her growth and keep her at a manageable size. This has created a big hue and cry over the net all over the world with some parents even linking it to eugenics.
When I first heard about the case I got squeezy too. I have been a fringe dweller in the world of autistic and mentally retarded people. My parents are actively involved in this cause back home and I have seen how difficult it is to take care of a 6 feet 2 adult with a mental capacity of a 2 year old. As difficult the situation is, parents rarely have thought of taking such extreme steps. So I wondered, Is this right? There are no medical precedents to this case. This may very well open up a slippery slope as pointed out by University of Pennsylvania ethicist Art Caplan. But let us look closely at the "pillow baby Ashley" case before we raise our voices to say this is wrong -
Shortly after birth, baby Ashley had problems feeding and lagged in development. Doctors diagnosed static encephalopathy (and still do not know the cause). The brain damage has left her in an infant stage - she is for all purposes a 3 month old - unable to hold her head, sit, roll or walk or talk and yet she is four feet five inches tall. That being said the girl is alert and goes to school for disabled children. However since her parents have not found a suitable care taker, they tend to the child at home themselves. There is no cure for Ashley (now and in the near future). She is going to be in the same state yet continue to grow bigger.
So her parents decided to stunt her growth to keep her smaller. She had her uterus and breast tissue removed and she received large doses of hormones to halt her growth. This will keep her small, reduce risks of bed sores and prevent her going through puberty (reducing the pain of periods and breast cancer which runs in the family). Her parents are taking care of her. Keeping her from growing is not going to make a difference to her - she is 3 month old mentally!!
Medical advances have meant that we can "save" lives that previously would not have a chance. At the same time, we really do not have the capacity to take care of severely handicapped people. Nor do we have a better support system for families that take care of the individual on a daily basis - 24/7. Some ethicist that say what Ashley's parents are doing is making the situation easy on themselves - yes, they are .. but try taking care of a infant that weighs like an adult for a whole day! You might change your mind too. On the other hand, the question to be asked is - who decides that this is the right thing for the parents to do? Take this scenario - What if a slightly challenged girl's parents decide that to save her from abuse in the future, we are going to prevent her from undergoing puberty. This girl is always going to be a minor legally. So do her parents have legal rights? Or should society intervene?
But society is not making the place safer in which case the parents would never have to make such decision. Realistically speaking, man kind is not going to make this earth into an Utopian paradise . Does this mean that this decision or others like it would be ethical?
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19 comments:
Good Post Sakshi. I thought about that when I saw the news. The more I think about it..I feel parents have taken a right decision. Its just not that they have to take care of a 3 month old baby in an asult body but with the number of sexual offenders...it gets even more difficult.
But Q is, does parents of Dowm syndrome kids (though a litte different than this case) can do the same?
Very dividing topic....It took a while for me to whole-heartedly choose where I stand on this issue. When I first read the article..I was upset over the manipulation of this person. However, after really looking at why the parents did this..I agree with them. I can say that I would do the same thing in this situation. They are doing this on their own which is amazing. Many parents in this situation pass a child such as this off to the state to be supported by the people because they feel they cannot handle all that the care entails. The outcome of this childs life will not change if the treatment were to happen or not. That is where I made my choice on the topic...it in no way improves or lessens the quality of life for this individual.
I have very mixed feeling about this. We say we are 'saving' Ashley's life by doing this. But what life does she have anyways? This is just a way of reducing work for the parents and making it easier for them to take care of her. Also in many ways easier for Ashley to deal with the situation. But is this what she really wants? We'll never know.
@Sameera - Yes, that is the question that troubles me. Who decides which child should or should not undergo this treatment? We the outsiders? What right do we have - I know how tiring it is to deal with kids like that (rewarding too.. but exhausts your mental and physical resources when the said "child" weighs more than you).It is still something that I agree with this case but not am comfortable with wholly.
@Sonya- I commend the parents too. And I agree with their choice in this case - but my worry is it will be used as precedents for many others.
@Mohati - the lil' girl is an infant in a child's body. She is for all purposes 3 month old. Her brain has not developed more than that. So even though we wont ever know what she wants, we can be safe to assume that the entire concept of adult hood, maturity and the rest ellude her. Also there are no cures waiting round the corner. And we are not saving Ashley's life - not even her parents are claiming that. They acknowledge that there actions are not to improve her life but they are not doing her any harm either. That, along with the fact that keeping her small helps them integrate her into the family better is what makes me agree to this decision.
I understand that this is not a solution - the solution would be if we as a society offer more to the care givers (emotional support, a physical hand and monetary backing) so that they can deal with this everyday and make the world a safe place where such innocents won't be abused. But since we don't have that to offer - this works best for the child concerned.
But it feels like it goes against the grain of everything we know, right? On a practical level I totally get that this makes sense. The rational part of my brain applauds the decision. But somewhere it sticks in my craw. Somewhere it doesn't feel right. I don't know, this is a very tough call. And also the question of where it'll end which you brought up. Humans can't be trusted.
@Revealed - There is something about it that makes me a tad quesy..
hey good post!Tough decision though
@Madhuli - Welcome to the science frontier :P Yes, A very tough and personal decision.
It seems like the justification for this action was largely utilitarian, ie, the greatest amount of pleasure for the greatest amount of people. It will make it easier on the parents and easier on ashley. Its framed as an act of compassion for ashley.
I really liked what sakshi said about the particular case pointing out the larger societal problem, a culture that is not attuned to the needs of such families. i wonder how any attempt to critique the right or wrong of the parents might miss the real ethical issue of the lack of support from the community.
I saw this on news a few days back and I too was torn by the question.
First thought is always towards the "it's right" side. Making it easier for parents and child herself. But then you start looking at the bigger picture. The child never gets a chance to make her own decision.
Some questions can never have a discreetly correct answer.
As they say, the world isnt black or white. I guess this too falls in the grey area.
@Vivek - But the child will never be an adult. She is forever going to remain @ infant stage, so should her parents make this decision?
Sure it helps them out but if they are taking care of her.. I say why not..
Decisions without precedents are always difficult and non-conformist. There might not be a totally right answer in this situation and many such instances in medical ethics. What definitely needs to be considered according to me is how many lives will be influenced and changed by this decision, and that includes the parents (caretakers) importantly. Thanks for sharing this story and your views, I wasn't aware of this one.
Its a topic of great confusion, and the decisions are tough on the decision maker. but some choices are tough....
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in a beginning I though that you have right, but in some point of the post I realize another point of view, what happen if this treatment really work? I mean if this can be use in other persons with the same condition?
I think that to make one of those things you have to think what is best for that person for more than we write advices or tips in this post only the person who is taking this situation known to determine this. We can only give opinions, but do not know what really happens in this situation ,so we can not say with certainty whether this is right or is wrong
This is so hard because I passed for this situation because my Aunt had a mental disability and he was 58 years old but he had the mentality of a child of 10 years, he died because sometimes he couldn't manage herself when he was walking on the streets, what a sorrow it was for me and my family.
What namely you are writing is a horrible mistake.
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