Wednesday, February 07, 2007

The Ashley Treatment

I've been meaning to write about this for a while. It's been in the newspapers and magazines. I don't know how many of you have noticed it. Having a special needs child, I have.

There is a family in Washington State who has a severely disabled daughter named Ashley. She stopped developing mentally at 6 months old. They don't know why. All tests were inconclusive. She has no hope of mentally progressing past where she is.

So they went to her doctors and, together, made a choice. When Ashley was 6 1/2 years old, her parents decided to give Ashley high-dose estrogen treatments to stop her growth. Along with this treatment the doctors also performed various surgeries--a hysterectomy, removal of her breast buds--to keep her the size of a 9 year old the rest of her life.

People are rather divided about this issue. Half find it "inhumane" and merely "convenient". The other half sees that the treatment was done truly in Ashley's best interest and support the family in their choice.

I'm in the other half. I totally understand where these parents are coming from. They did this out of love for their daughter--their daughter who they hope to care for and keep as part of their family (they have two other children) for the rest of their lives.

If you go to their site or Google The Ashley Treatment, you can read every well-thought-out reason they did this treatment. I could restate every reason here. But since they have taken the time to putting up a site and stating everything so clearly, you should really read their own words.

My main thought, though, is that unless one is in this situation, it's impossible--and almost arrogant--to judge. There are people called "medical ethicists" involved in judging these parents. There were medical ethicists involved in listening to the parents' original request. Those ethicists helped okay this treatment.

But now there are medical ethicists from outside the case who claim this is not an appropriate treatment. That it dehumanizes the disabled. That is was done purely for convenience. I think many of these ethicists are saying these things to be quoted in papers and speak on radio shows. Because if they took the time to read what these parents have written, they'd realize this is crap. This girl is not minorly disabled. She is severely, mentally disabled with no hope of change.

I think one outside ethicist’s comment was that this treatment was unseemly. Someone on the medical team responded that. To him it was more unseemly to have a woman who was physically 30 years old with the mental capacity of a 6 month old than a woman who was physically 9 years old with that same mental capacity.

Another ethicist commented that people with a disabled family member get the help they need. Now, while there are many wonderful caregivers out there doing a great job, the fact is, there are more unreliable ones. I've spoken to more frustrated parents who go through nurse after nurse then parents who are over the moon with the fantastic care they've found for their child. The pay for in house nurses is lousy compared to those who work in hospitals. So you end up with a lot of flaky caregivers. (Though, I have to say, we haven't had this experience because we got personal recommendations for respite workers and then got them approved by the company). Still, in the end, many families feel that for their loved one to get good care, they have to do it themselves. And that is, quite honestly, exhausting.

Every other reason Ashley's parents gave was also clearly for their daughter's well being--if she grew physically into adulthood, it would be harder on her body (bedsores which can lead to infection, a bigger body is more taxing on organs). She is not going to have children, so why have a uterus? Why have the discomfort of menstruation? Her family has a history of breast cancer and the women tend to have large breasts. This would be uncomfortable for her considering she spends most of her life on her back.

And, yes, in the end doing this treatment makes Ashley more portable. But that was not the primary reason for this treatment. Still, I'd understand it if it was a motivating factor. I'm 5 feet tall. That's 60 inches. Soren is over 37 inches. Getting him in and out of the bath recently became too difficult for me. I was afraid I was going to drop his slippery body. So now he's in the shower in his special bath seat. It's better, but it still isn't easy.

That being said, this is not a treatment we are considering for Soren. Unlike Ashley's parents, we do have hope for Soren's mental development. That's why we're going to the DR two more times this year.

Still, if that hope doesn't pan out, this is an interesting treatment to consider. I have huge fears of Soren being a full-grown man who does not have the mental capacity to care for himself. I fear what it would mean for his health. I fear what it would mean for my health. I fear what that would mean for us as a family. How things would have to change while knowing that I would always want Soren to be with us. These parents made the choice that they felt was best for their daughter and their family. I just hope we never have to make that choice.


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