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?