Introduction to the Ashley Treatment

From Wikipedia (and there are many other sources) …

The Ashley Treatment refers to a controversial set of medical procedures undergone by a Seattle child, “Ashley X”. Ashley, born in 1997, has severe developmental disabilities due to static encephalopathy of unknown etiology; she is, and will remain, at an infant level mentally and physically. The treatment included growth attenuation via estrogen therapy; hysterectomy, bilateral breast bud removal, and appendectomy; see a one slide summary of Ashley’s condition, the treatment and its benefits as prepared by her parents.

The principal purpose of the treatment was to improve Ashley’s quality of life by limiting her growth in size, eliminating menstrual cramps and bleeding, and preventing discomfort from large breasts. The combination of the surgery and the estrogen therapy attracted much public comment and ethical analysis in early 2007, both supportive and condemning. The hospital later admitted that the surgery was illegal and should only have been performed after a court order, a position that is disagreed upon by the attorney of Ashley’s family.

Note that one of the primary doctors involved, the one to perform the hysterectomy on the six year old, committed suicide for unclear reasons. Additionally, the procedure was ruled illegal, the hospital involved has admitted such, and it resulted in violation of Ashley’s constitutional and common law rights.

The following diagram, originally here, was created by Ashley’s father to explain the treatment. From his website:

A one slide summary of the Ashley Treatment, which enumerates key points about Ashley’s condition, main benefits to Ashley and some remarks.

We will look at this, one piece at a time. First, the entire slide:

Slide describing theory behind Ashley Treatment - growth attenuation

4 thoughts on “Introduction to the Ashley Treatment

  1. Thank you for the article, I would like to share some thoughts from my experience.
    I met my wife Jennifer 13 years ago and she had a severely disabled 9 year old son. She had set her entire life up to facilitate his care and to accommodate his unique needs, no one doubted that he would not have been alive without her tireless effort fighting the state for care hours, fighting to get his medical needs met at home, fighting the insurance companies to cover the out of the box medical equipment that helped him.
    She knew of Ashley’s case and knew Dr Gunther from Childrens. She felt that it was a smart, compassionate procedure they were performing and knew they were a loving family who were doing what they thought was best for her long term quality of life. Jennifers son was in a similar condition ( 6 month to 1 year old cognitively, g-tube, unable to walk, ACE needed for bowel movement, deaf, respiratory therapy needed, curass vent and O2 monitor used at night, seizures, severe neurological impairment that prevented learning among others ) and she had met with Dr. Gunther to get more facts and started a file to consider growth attenuation for her son. Before she could get any further the furor over Ashley stopped her chance to get it done in the small window her son had left.
    I don’t claim to know nearly as much as Jennifer on this subject, she handled every aspect of caring for a severely disabled son. She did express the following:

    This procedure was only appropriate for a very small and specific part of the disabled population, hence the need for family, Dr. and ethics board to agree on it. To claim it would be used on others or Down syndrome people made no sense — akin to the NRA saying we can’t outlaw machine guns because it will lead to confiscation of all guns.
    This procedure and the doctors and families considering it have been villainized, often by others in the disabled community who feel they can speak for all. The truth is that these families are doing their best to love and care for the most acute of the disabled, they worry about their future, they worry about keeping them at home, they worry about the effect all this has on their own lives and families. They deserve our compassion and real solutions. Before you judge them try spending time with them and you will probably find these parents know their own children better than anyone else.

    My wife Jennifer recently passed away at the age of 52. I believe the years of stress shortened her life, effectively she sacrificed much of her life to care for her son.
    He is now 21 and 6’2″ with the same needs as before. He does not recognize people and I do not believe knows his mom is gone. He certainly would not have understood or cared if he was smaller. All he has is a step father who has quit work to take over as caregiver/coordinator for his other 5 in home caregivers. As I look toward a future for him I know at 57 I cannot keep this up indefinitely, the adult family homes and supported living providers I have spoke with so far all do not want to take him on. Once I give out, the only option is the state run institutions which are fighting being shut down.
    Had he had growth attenuation it certainly would not have solved all our problems, but his future might look less grim.
    Sorry to go on so long. I did not write this for sympathy, in fact my wife used to hate it when people said “ poor Jen, look at all she has to do with her son” She said he is just the way God made him and asked for no sympathy.

    I do hope to make people think about how their actions regarding this procedure may affect others with the most acutely disabled family members. There is a broad spectrum within the disabled community, please do not judge others and their families unless you take the time to truly understand their lives.

    Thanks for reading,

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