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Occasional ramblings by an anesthesiologist/mother (and sometimes her husband).

Thursday, January 04, 2007

The "Ashley Treatment"

Some of the sites I visit on the internet ( Drudge , Fox News , etc) have been buzzing about the case of Ashley X. It was originally told as a case report in October in the Archives of Pediatrics & Adolescent Medicine by the two Seattle doctors who designed the treatment plan. In news articles since then, their story has been presented.

In an effort to clear up "misconceptions" about what they had done, her parents set up a website . In it the discuss their decision in great detail, providing reasons as to why the chose to do what they did. They also include pictures of Ashley, in their home.

What I found most interesting were many of the comments they published. They included many positive comments from an MSNBC message board in support of their decision. And, in what I consider a bold move, they allowed people to post comments on their own site, with no obvious censorship of negative comments. Some of the commenters call them selfish, liken what was done to Nazi experiments, some call them mutilators.

For those who do not know the story I will provide a brief summary: Ashley was born a full term healthy baby but she never progressed mentally or in her motor skills. She was diagnosed with being in a static encephalopathic state. She cannot talk, hold her head up, move/roll without assistance, hold a toy, or eat without the assistance of a feeding tube. Although she appears aware of her environment and startles easily, her parents are unsure if she even recognizes them. In 2004, when she began to show signs of early puberty, they met with her doctors and developed a treatment plan that included: a hysterectomy (removal of the uterus), appendectomy, removal of her breast buds (which would prevent development), and estrogen to stunt her growth.

When I first read these articles my initial reaction was horror. To do this to a six year old seemed cruel and bordered on child abuse. It amounted to forced sterilization (at least that's what my initial reaction was). Not content with reading a few articles about it (especially since I have a healthy distrust of the media) and feeling that those articles seemed one-sided I read what her parents wrote about it.

Usually buried in the articles was that the procedure went before the ethics committee which approved the decision. Also never mentioned were the reasons the parents made some of these decisions.

The hysterectomy was indeed to prevent menstruation and the pain from cramps. Many people claim this is forced sterilization and eugenics. However, I agree with the ethics committee's assertion that given her illness, she would be unable to voluntarily reproduce, so this did not amount to forced sterilization. If she has no motor skills, the mental state of an infant, she would be unable to consent. Laws preventing forced sterilization, were meant to prevent mildly disabled women who may wish to have children not be sterilized against their will. It does not apply in this case. The concern (according to the parents) was primarily what to do with menstruation. Looking into the comments, there are many references to children with similar illnessess and the trauma their period causes them. On parent talked about how her daughter thinks that she is dying each month, another mentions her daughter "playing" with her menstrual bleeding. I still have doubts that this was a necessary procedure, but I think her parents intentions were good.

Removal of the breast buds was intended to prevent breast development. According to their website there were several factors in their decision. The first was that large breasts (on relative had a reduction at age 19) on both sides of the family, a family history of fibrocystic breast disease (which can be painful) and a family history of breast cancer. She was already showing signs of sensitivity and pain in her breasts. In addition, her parents felt that breasts could impose an impediment to strapping her into wheelchairs/strollers for transport. They also were concerned about making her a target for abuse by caregivers. Reading their comments section, this does not seem to be a wholly unfounded concern. I can't say that I disagree with their thinking.

As far as the appendectomy, the thought was that it would be better to take it out while the hysterectomy would be performed. Ashley would be unable to indicate any symptoms of pain should she develop appendicitis and it would put her at higher risk of undetected rupture.

They also did decide to stunt her growth. At this time she is approx 65#. This is nearly the limit of what her parents can physically lift. Additionally it was felt by the doctors that smaller size would limit her risk of pressure ulcers, pneumonia, and bladder infections.

My take on this "treatment" is that her parents had her best interests in mind. They did not make this decision lightly and they did what they thought best for their daughter. It is clear that they love their "Pillow Angel" and they should not be vilified for making such a decision. Having said that, this situation is an extreme case. This treatment cannot and should not be used to justify doing similar procedures on disabled children. I'm not fully convinced this was the right thing to do in this case (much less in any other situation). I also think that there is no right answer in this situation. I may not have made this decision if this was my child, but her parents did and they did it with much thought. I cannot fault them for doing what they felt was right, nor should they be vilified.

That's my two cents on this. Any thought of your own?

2 Comments:

Blogger Angry Lab Rat said...

I have only a shred of understanding for Ashley's parents. Sure, maybe she'll live a little easier this way, but facing challenges is part of being human, for her and her parents. And who knows what advances will come about in her lifetime that could improve her mentally and physically, and yet she is forevermore trapped in a 9-year-old's body and sterilized, eugenics-style, simply because they didn't want her to suffer the mildness of menstruation (unlike every other woman in the world between ages 12 and 60!). Her breasts were removed for mere convenience, and her appendix was removed "just in case." This is nothing short of child abuse.

For more comments, please visit my blog post on this:
http://angrylabrat.blogspot.com/2007/01/forever-young.html

.

2:19 PM  
Anonymous Kristen said...

I was put off myself when I first heard about it a few months ago on an LJ community. But having read the more recent BBC article, and the link there to the parents' blog, I think they are simply being realistic. It is highly unlikely that the medical miracle to give this girl greater mental capabilities will ever happen -- she is an infant in a nine-year-old girl's body, and left alone, she would have been an infant in a grown woman's body. This isn't a case of mild mental retardation, like a friend's brother who has Down's syndrome; she is severely incapacitated, with no hope of improving -- if it hasn't happened in nine years, why sit around waiting for another nine, or eighteen, or 30 or 50 to see if something happens? They are dealing with the reality of her current condition, and every article I've read did mention that it went for review before a board of doctors.

Ashley will never be cured, and will probably never improve beyond her current three-month-old infant mental state. Her parents will not be around forever. It is already difficult to get full-time professional care for a disabled child; it is all that much harder to get the same care for an adult, and a good bit of that has to do with how difficult it is for a grown adult to physically manage every aspect of another grown adult's body. Especially after reading their blog, they truly are doing this in order to keep their daughter with them, and as much an engaged member of their family as possible. The physically larger she grows, the more difficult this becomes. It's not something I'd want to see recommended for every mentally incapacitated person; but in this individual case, I think they parents really did do their research, and truly had their daughter's best interests -- not simply their own convenience -- at heart.

4:55 PM  

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