Monday, January 08, 2007

Always a Child

Interesting News Item of the Day:

A young girl with a mental disability has had multiple operations to ensure that she will, throughout her life, stay the size and general physiology of a young girl. She was given hormone treatments to keep her around 4 feet tall. Her ovaries and breasts were removed to ensure the absence of periods, lactation, etc. Her parents and the doctors involved believe that this was a humanitarian step to take, since her mind would never develop beyond the age of a very young girl. This will allow her, throughout her life, to be cared for physically in accordance with her mental developmental level.

This has brought about strong responses. On the one hand, many people are up in arms about the ethical issues raised. On the other hand, other parents of mentally disabled children are asking to have similar procedures performed for their children.

If I had a daughter that was seriously mentally disabled, and such procedures were available to me, I would seriously consider having them done. I don't think the parents of this girl have acted unethically. But, if you disagree with me on that, I'd be very interested to hear your thoughts.



Kevin said...

Strange. I can imagine cases where this would be wrong, but at this point, like you, I cannot fault them for their decision. I have many reservations about it, but I also don't think I fully appreciate their position.

To me, the dilemma revolves around what Ashley wants (to the extent she can understand) and whether their decision is accurately informed and not merely speculative. e.g. if, in the long run, this actually damages her health or reduces her quality of life, opposite their intent.

I imagine there would be some personal benefit from her having a maturing body, but perhaps it is too subjective and difficult to quantify?

From the picture, I wonder if she might be somewhat disproportioned.

purple_kangaroo said...

Their reasons and the comments of others who have dealt with severely handicapped people on the blog are very compelling. If it will really bring such a great improvement to her comfort and quality of life, I'm all for it.

purple_kangaroo said...

Here's an interesting article by the mother of a severely disabled child, arguing that the steps taken in Ashley's case were extreme and unnecessary. It gives a different perspective on things.

purple_kangaroo said...

Here's another interesting commentary, this time from a doctor who knows a couple of the physicians involved in the case.

Douglas said...

Tough case. Thanks for the background info. My gut says let nature run it's natural course. Making something easier for the parents doesn't necessarily make it better for the child. I tended to identify with the reasons the dreammom blog gave.

I feel terribly inadequate to comment on this topic though, so I'll leave it at that.


purple_kangaroo said...

Doug, by letting nature run its natural course do you mean allowing the child to die? In order to survive at all, she's going to have to have some medical interventions . . . I believe she eats through a feeding tube, which of course requires a somewhat invasive surgery in itself.

The real question, in my mind, isn't whether medical intervention to increase the child's comfort level and improve her life is appropriate or not. It's where to draw the line and how to judge when the benefit is worth the risk and invasiveness. If there is a good way to accomplish the same things without the intervention, then it seems to make more sense to use the less-invasive means to reach the goal, as dreammom said.

I must say, though, I think perceptions of the reasonableness of particular measures would certainly be colored by a person's own experience. Dreammom said that she couldn't imagine removing a person's uterus to prevent menstrual pain partially because she had never had painful periods. Another person argued that they hadn't heard people say that disabled people had pain from their periods.

To say it's highly unlikely that she would experience any significant discomfort with her cycles seems patently ridiculous to me, because my own experience and those of many of my friends is so different. There are lots of people who experience moderate to extreme discomfort with that natural bodily function.

Disabled people aren't automatically exempt from that pain. I think of Terri Schiavo, who was regularly given analgesics during her period because her caregivers felt she was expressing pain.

Things like difficult, painful periods can run in families. So if it's common in that family for the women to end up incapacitated by severe pain, nausea and other flulike symptoms every month, then certainly it could make sense to remove the child's uterus to prevent such agony if there is absolutely no chance she will ever wish or be able to use it to bear children. I've often wished I could temporarily remove mine until I need it again. :)

Douglas_Coombs said...


Do we know the full effects of a drug like this on a person? No. From articles I've read, there are important changes that take place in the brain during puberty. Is it good to never let your child grow up physically and mentally? Perhaps the child will never grow up mentally in the normal sense, but do we know what the effects on her brain will be relative to if she had not undergone the treatment? It strikes me that the parents are tampering with nature more for their own convenience than anything. I'm uncomfortable with that. The child wouldn't be impossible to take care of if she didn't have her ovaries pulled and breasts lopped off and was allowed to mature normally. She'd only be more difficult to manage. Besides that, the parents reasons are mostly speculative in nature. They really don't know how much more difficult taking care of her will be because they've never experienced it. Lots of things that appear difficult or impossible up front end up being valuable life experiences. With that in mind, I see no compelling reason to keep a kid a kid artificially. I'm sure lots of parents have dreamed about such a procedure by the time their kid hits 15-17. I know it would have made life easier on my parents to do that. I don't think it would have made their life better. I have a cousin who was adopted as a crack baby. He will never have the mental capacity of an adult. However, I've seen a change in him from before puberty to after. He will never have a family or move out of his parents house or do many of the normal things people without his disabilities do. He probably won't even live until he's 30. He was supposed to be dead several years ago. Growing up has been good for him, though.