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Thursday 4 January 2007

Info Post
If my sources are right, there should be a discussion tonight on CNN's Nancy Grace show of the "frozen girl" and the ethics of her parents' choices that are recently making news. From the BBC News:

Ashley X was born with severe and permanent brain damage, called static encephalopathy.

The nine-year-old has the mental ability of a three-month-old baby and cannot walk or talk.

Her parents argue that keeping her "frozen" as a girl rather than letting her go through puberty and growing into a woman will give her a better life.

They authorised doctors to remove her uterus to prevent menstruation, to limit her breast growth through the removal of breast buds so that she would not experience discomfort when lying down, and give her doses of hormones to stop her growing taller.

Opponents have accused Ashley's parents of "Frankenstein-esque" behaviour - of maiming the child for the sake of convenience.

From the website of Ashley's parents:

The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors.

And further details on the procedures:

In early 2004 when Ashley was six and a half years old, we observed signs of early puberty. In a related conversation with Ashley’s doctor, Ashley’s Mom came upon the idea of accelerating her already precocious puberty to minimize her adult height and weight. We scheduled time with Dr. Daniel F. Gunther, Associate Professor of Pediatrics in Endocrinology at Seattle’s Children’s Hospital, and discussed our options. We learned that attenuating growth is feasible through high-dose estrogen therapy. This treatment was performed on teenage girls starting in the 60’s and 70’s, when it wasn’t desirable for girls to be tall, with no negative or long-term side effects.

The fact that there is experience with administering high-dose estrogen to limit height in teen-age girls gave us the peace of mind that it was safe—no surprise side effects. Furthermore, people found justification in applying this treatment for cosmetic reasons while we were seeking a much more important purpose, as will be detailed below.

In addition to height and weight issues, we had concerns about Ashley’s menstrual cycle and its associated cramps and discomfort. We also had concerns about Ashley’s breasts developing and becoming a source of discomfort in her lying down position and while strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues that we discuss below. The estrogen treatment would hasten both the onset of the menstrual cycle and breast growth. Bleeding during the treatment would likely be very difficult to control.

It was obvious to us that we could significantly elevate Ashley’s adult quality of life by pursuing the following three goals:

1) Limiting final height using high-dose estrogen therapy.

2) Avoiding menstruation and cramps by removing the uterus (hysterectomy).

3) Limiting growth of the breasts by removing the early breast buds.

The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk.If Ashley’s appendix acts up, she would not be able to communicate the resulting pain. An inflamed appendix could rupture before we would know what was going on, causing significant complication.

I plan to watch the show tonight and then discuss this further.

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