The “Ashley Treatment” and Quality of Life
BBC NEWS | Americas | Treatment keeps girl child-sized: “Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.
Along with hormone doses to limit her growth, Ashley’s parents also opted for surgery to block breast growth and had her uterus and appendix removed.
They say the treatment will help to improve her quality of life.”
(Via BoingBoing.)
My reaction to reading this story was so mixed that I felt that I needed to share it with everyone.
Perhaps it is because I’m selfish, but each time Cathy has been pregnant, I have been terrified that the baby would have some form of severe birth defect. I wish I could say that the twisting in my gut when I see adult parents with a disabled child or adult child was purely sympathy, but I’ll admit there there is an element of horror in my reaction. Not at the kids themselves, but the situation…that these parents, who wanted nothing more in the world than a normal, healthy child received a child with serious issues that would shape the rest of their lives.
Perhaps I’m just selfish and shallow, but that scares the living hell out of me. The enormity of it. Knowing that your child will never mentally age. Will always be like this, frozen at this stage of development. In a way, it seems like there is no future there at all, only the repeat of the same day after day.
Admittedly, I have no idea what it is like. All I can see is what I construct in my head. So if any of you are parents of disabled children, please accept my apologies if I offend. And please, fell free to comment here…I’d appreciate an experienced perspective.
When I read this article, my first reaction was, “How dare they mess with this poor girl’s body? Isn’t it enough that she will always have the mental capacity of a three-month old?”
Then I thought about it a little more. And I thought about these parents’ point of view. As parents, we all want to do what is best for our kids. What would I do for my child given the situation?
Anything I could. Naturally.
I tracked down the family’s blog, where information have been posted about this. Before commenting, please head over and read it. However, here is one excerpt I found interesting:
A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.
Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.
Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.
I am still thinking all of this over, but my preliminary thought is that the parents are right to do this. In light of the situation, this might really be the best thing for this poor girl. If my child was in a similar situation, and this could truly help her quality of life, I believe I would probably do the same thing.
I am curious…what do you readers think about it?
January 5th, 2007 at 12:00 pm
This is so tricky. I’m not sure that I should be the first to weigh in, especially as I’m not a mother. I have to admit that my first reaction was horror that the parents would choose to rob their daughter of her right to womanhood. When I read a story like this I have in the back of my head the voice of my Mum telling me that she had been advised to terminate her pregnancy when I was on my way as I was going to be too disabled to lead a normal life. She chose to carry on and give me the best life that I could possibly have.
Without my Mum’s courage I wouldn’t be here at all and as it transpired that the doctors were wrong and my problems were largely fixable, I’m so glad that she went against the advice. As usual I’m making it all about me, but I think my point is this. In 1974 technology told my Mum that her baby was too damaged to have any quality of life. They were wrong. In 2007 technology says that Ashley has reached her full potential, but who knows what may happen in the next 30 years!
I don’t think they have made the wrong decision though. It is the decision that they are happy with and so it is correct for their family and should be respected as such. I just don’t think I’d choose the same path, but that is easy for me to say when I don’t have to.