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

The Title

title

First, lets look at the title. Using the term “Pillow Angel” is an obvious attempt at dehumanization. These children are not “angels,” they are children. The proper title should be “The Ashley Treatment for the well being of our disabled children.” The art of dehumanization has been perfected over the millennia to allow one to fight wars, euthanize, and destroy cultures and people. Seeing others as less than human, or just simply not human, makes it easier to control or manipulate them.

She is not an “angel,” she is a human being, and needs to be treated as such. In this country, in this culture, in this time, we do not force surgery upon fellow humans, other people, especially untested surgery on an unknown diagnosis. Do not de-personalize her by using emotional words, she is a PERSON, a human being.

Quality of Life!

quality_of_life

Read that carefully. “Makes it easier to care for Ashley” .. so who is this for? There is no proof it will improve Ashley’s quality of life. How can we say that? That makes no sense since she is undiagnosed and we have no idea what her life will be like in the future. This is a claim of the unknown.

To mutilate this girl to make it easier to care for her … is something that we don’t do to our animals, let alone our children. If this is the reason, then it must be understood. “… easier to care for …” means that all these surgeries and treatments make it easier FOR THE CARETAKER. His words, not mine.

Ashley’s Condition

condition

This is vital, her condition as expressed by her father. Read this carefully. Note the first line “remains undiagnosed.” He is expressly saying that neither he, nor medical science, knows what is actually wrong with Ashley. The etiology is unknown. She does not have a known syndrome or condition. His claim. Hence there is NO way to predict the future.

Then the first bullet, “Permanently Unabled” which are words he has made up. This is NOT a diagnosis, it IS an OPINION. How can he say she “will not improve” if in fact there is no diagnosis? Where is the proof? You do not do surgeries and treatment on a hunch. Then it says “infant level mentally & physically” which is a guess as to where her mental abilities are. She may not be able to communicate but there is no way to measure her understanding of the world, especially her environment. It may not be on an infant level. “… and will not improve” with this he is saying she will not improve mentally, yet there is no diagnosis or etiology so it is a guess. He also says she will not improve physically, again a guess, or a self-fulfilling prophecy due to the surgery and hormone treatments.

The next two bullets have the same issue, how can he have an expectation of size if he does not know what is wrong with her? And her lifespan? Again, an OPINION of her father. Additionally, you do multiple surgeries on this young lady based on YOUR EXPECTATIONS of the future?

Permanently Unabled

pu

This is an attempt at justification for the made up category of “Permanently Unabled.” This is NOT a new category of disability as the first bullet claims, it is a name for an undiagnosed and unknown condition. Nothing has shown that survival is only due to recent medical advancements, besides that being a moot point. The term “Pillow Angel” is an attempt to obfuscate and dehumanize these children. They are neither pillows nor angels. They are human beings, persons, children.

There is no proof offered that this constitutes less than 1% of any population, for if it was to have such a statistic, then there would have to be a diagnosis. You cannot claim an unknown is a certain percentage of anything. What is the evidence for this claim? Please back up this number with scientific data. Additionally, are they truly the “most vulnerable of society”? That says volumes about your care for her. She is more vulnerable in your home or in a modern medical facility then poor homeless children living in the street? What is this claim based on? The hospital has admitted that the procedures done were done illegally, they needed a court order which was NOT obtained. Hence, in my opinion, YOU have made your own daughter one of the most vulnerable of our society, a person on whom unprecedented, untested, surgical modifications were illegally performed.

Furthermore, bullet three has the bizarre requirement of “profoundly precious to their families” as part of the definition. Obscene use of “profound” and an obscene requirement of the made up category. The next bullet give the choice of a family’s loving care or getting “warehoused in institutions” as if those are the only choices for any child.

The next bullet alludes to another statistic that is backed up by absolutely no data. Some may believe that increased weight and size is their worst enemy, others believe it is the likelihood of dying of aspiration, stroke or seizure. What is this based on? What study shows this to be true?

Finally, this is identified as an “extreme condition.” No, it is an undiagnosed condition. She may continue through life as she is now, and not need your medical intervention. Individualized options in the hands of parents is not always an option. That is why we have family courts, social services, and laws to protect children.

Breast Bud Removal

bbrRemoving her breasts before they even develop has its own issues. “Simple” surgery is an oxymoron. It is only simple if nothing goes wrong. Surgery involves anesthesia, risk of infection, etc. and is not to be taken lightly. The elimination of “discomfort caused from large breasts” assumes several things. One is that in fact she will have large breasts, not a given. Additionally, discomfort to whom? It depends on her overall size. And what is a “supportive harness”? “Eliminate possibility of breast cancer” is valid if there is a strong history, if she carries the known genetic traits to make her susceptible, and if in fact there are other issues. To remove “breast buds” to eliminate the possibility of breast cancer with no other factors is like removing one lung to half the chances of lung cancer. What about other “female” cancers? Do you remove the cervix, ovaries, and the vulva? All cancer sites. Have you removed her teeth to eliminate the chance of pain from cavities and other oral issues? If Ashley has a “normal” sister, was she given a mastectomy at a young age to also prevent breast cancer? “Avoid sexualization towards caregiver.” TOWARDS caregiver from having breasts? From what, accidental nipple stimulation? Or does this mean the caregiver sexualizing her? Either way is wrong. If you worry about Ashley sexualizing the caregiver from breast sensations, then you must also perform a clitorectomy since during bathing she may feel sexual towards the caregiver. If you worry that the caregiver will sexualize her, then you need to choose better caregivers, or those that only like small breasted women. And make sure she does not have any secondary sexual characteristics such as pubic hair.

Hysterectomy

hysterThe mention of a “tiny” uterus is to attract your emotions, make the surgery seem trivial, as is the mention of “almond size” glands above. This is surgery, period. It has risks. Who is to say that the young lady will have pain and cramping upon menstruation? Not all women do. What is the issue with bleeding? She will be wearing a diaper anyway, that is moot. Eliminating the possibility of pregnancy? How will she get pregnant, unless she is raped (I assume she will not choose a lover) and rape can still happen (this hearkens back to the comment on sexualization with regards to her breasts). To eliminate pregnancy, just tie her tubes or other much less invasive procedure. And yes, it will eliminate the chance of uterine cancer, so why not remove a lung to halve her risk of lung cancer? Why not remove her vulva since that is another cancer site, and why not just close up her vagina since there will be no need for it anymore and eliminate the chance for vaginal infections and rape? Why stop at the “tiny uterus”?

Appendectomy

appendectomy

There have been recent reports and scientific studies that in fact the appendix does have a use. Why not remove the gallbladder (At least 10% of adults get stones in their gallbladder) at the same time to ensure against future issues? Is the limit a 5% chance of a problem? What other physiological issues have a 5% chance or greater of occurring and do we use surgery to eliminate that chance? What about tooth aches? Are you doing anything preventative such as extractions?

Sizing for Wellness

sizingThere are questions concerning estrogen therapy, how it effects bone growth and other issues known and unknown. The idea of “increase mobility thru caregiver” is a comment on the caregiver, not a reason to destroy a child’s growth. “Increase chance of living at home” is 100% under the parent’s control, again, it is not a reason to manipulate and mangle the body of a child.

To what extent does one go to decrease the chance of things that may or may not happen? It is not a given that she will need scoliosis surgery or have bedridden induced infections. Remember, she has NO diagnosis, there is NO history of anyone going through what she will. Bedridden induced infections can easily be mitigated by effective caretaking.

“Physical self closer to cognitive self” is the most outrageous statement. First, the cognitive self cannot be measured since communication may be limited, that is an unknown. Second, there is the claim of an “infant level mentality” so this means that her “physical self” should be closer to an infant? That would necessitate more surgery to “turn back the clock” and remove the physical improvements and growth she has experienced.

Surgery

surgeryMost children go home the same day after a tonsillectomy. For Ashley’s surgeries to be compared to a tonsillectomy shows how manipulative and outrageous this propaganda is. This surgery included a hysterectomy, double mastectomy, and an appendectomy. That cannot be compared to a tonsillectomy in any manner, including risk. As for the timing of the surgery, that is a moot point, the surgery itself is the issue. The Estrogen therapy was an additional risk that Ashley was exposed to.

Remarks on the “Ashley Treatment”

remarks

Now for the final outrage.

Let’s take these one at a time:

“Appropriate for children with similar condition to Ashley’s”

  • Ashley does NOT have a diagnosis, hence similar to the unknown?
  • Ashley’s etiology is unknown, hence again, similar to the unknown?
  • “Appropriate” is a subjective opinion of one man, not the medical community.
  • The procedure was ruled ILLEGAL and resulted in violation of Ashley’s constitutional and common law rights.

“Relatively safe and leads to significant, lifelong & direct benefits to these children, in the avoidance of pain and suffering & the improvement of their quality of life”

  • Multiple surgeries on a six year old are not “relatively safe.” Relative to what? What evidence is there?
  • How can you claim “significant, lifelong” benefits with no study. This just occurred recently. What will the effects be? What will the estrogen therapy on a six year old do in the future? “Avoidance of pain and suffering” from what? Potentially large breasts?
  • “Improvement” of who’s quality of life? Ashley’s or the caregivers? What proof is there? Since there is NO diagnosis, how can you know the future quality of life?
  • The procedure was ruled ILLEGAL and resulted in violation of Ashley’s constitutional and common law rights.

“No amount of state funding or resources would replace these direct benefits”

  • The “direct benefits” are offered but not proven. This is the first (publicized) instance so we do not know the future, and since there is no diagnosis, we don’t know what would have been if she was not mutilated.
  • This is a very subjective statement, and grandiose. Any benefit to Ashley (as opposed to her caregiver) may well be surpassed with other methods paid for by the state or outside resources.

“We received 1,150 emails from parents & caregivers who have direct experience with Pillow Angels, & who expressed a strong support for the treatment”

  • “Pillow Angel” is a made up, dehumanizing term, not a diagnosis. Those people have their own issues, their own children, and potentially entirely different circumstances.
  • No proof of this number, nor does it matter. Entire populations have supported evil or wrong causes, that does not make them moral, ethical, legal, nor correct.
  • And how many emails from parents and caregivers of the severely disabled who expressed disgust and revulsion?
  • The procedure was ruled ILLEGAL and resulted in violation of Ashley’s constitutional and common law rights.

“Dozens of parents of Pillow Angels worldwide are evaluating the treatment for their children”

  • What is your point?
  • And how many find it abhorrent?
  • The procedure was ruled ILLEGAL and resulted in violation of Ashley’s constitutional and common law rights.

For more, see my post on Psychology Today.