Ashley X

[Aeroplane]

I find this to be a very troubling situation in that I agree with almost both sides of the issue. I'm posting two articles on it and want to know what you guys think. It's troubling to me for many reasons, and the fact that I can't seem to make up my mind . . . well, the more opinions that I read, the better I think.

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Surgery to stunt disabled girl's growth raises ethical questions

CHICAGO, Illinois (AP) -- In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.

The uterus and breast tissue of the bedridden 9-year-old girl were removed at a Seattle hospital, and she received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home. (Watch a bioethicist discuss Ashley's condition.Video)

University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."

Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.

"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."

The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.

Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.

An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.

She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.

"Ashley's smaller and lighter size makes it more possible to ******* her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote.

Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.

"Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said.

Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.

"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time."'

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Ashley - the disability perspective
By Geoff Adams-Spink
Age & disability correspondent, BBC News website

The case of Ashley X - the American child with learning disabilities who has had surgery and other treatment to keep her body "childlike" - has triggered a debate about medical ethics. But what do disabled people, themselves, have to say about the matter?

Disability rights campaigners often accuse health professionals of over "medicalising" disability and ignoring the social aspects.

This goes to the heart of the debate over two opposing ways of looking at disability - the social and medical models.

The medical model tends to favour using surgery, drugs and other interventions to "normalise" a disabled person.

The social model stresses that disability is caused by barriers in society - physical or attitudinal - that turns a person's impairment or medical condition into a disability.

Disability rights legislation is based on the principles of the social model - hence the requirement for businesses to make their premises accessible.

Inadequate social support

Not surprisingly, the Disability Rights Commission (DRC) attributes the difficulties being experienced by Ashley's parents to inadequate social support.

If that were in place - the argument goes - there would be no need for Ashley to be kept in a permanent state of childhood.



"This is unnecessary treatment to deal with what is, essentially, a social problem: the poverty and lack of support faced by families with disabled children in both the United States and Britain," said the DRC's Agnes Fletcher.

"Ashley's parents say that they cannot afford paid carers to come to their home to support her and this is one of the reasons they give for the treatment; but no one should have medical treatment that is of no benefit to them without their consent."

Although what the DRC calls the "care crisis" is part of the equation, there are other considerations of a moral and ethical nature that have been fiercely debated by contributors to the Ouch! website - the home of disability at the BBC.

Some readers question the suitability of the parents, others the professionalism of Ashley's doctors - both should be prosecuted, argues one reader.

"It seems the parents are being allowed to manifest their fears for the child's future in an extreme way," argues another reader.

Basic rights

For Andy Rickell from pan-disability charity, Scope, the issue is one of fundamental rights.

"To make such a choice for their daughter is an abuse of this young woman's human rights and has worrying implications for other disabled people," he said.

"We would expect any similar case in the UK to be taken to court and the rights of any disabled child protected."

Other Ouch readers worry that the case sets a dangerous precedent for, "carers being able to sculpt disabled people into something more convenient for t****.

The consequence of Ashley growing into a fully developed adult could well be that she would have been forced to live in institutional care if her parents were unable to look after her.

"Would that make her any better off?" wonders another reader.

And he goes on: "If this girl is to have any kind of meaningful equality it will surely be equality with a small child, not adult equality as she will never be capable of the independent decision making needed to function as an adult."

Restricted view

But this view is strongly countered by another contributor who argues that society has too restricted a view of the capabilities of people with profound learning disabilities.

"People with even the most supposedly severe and profound learning disabilities - people who have been assumed to have no 'intelligence' or means of communicating their feelings at all, people who have been explicitly told they were nothing more than an 'empty shell', have been facilitated to find methods of communication with which they have incredibly clearly expressed themselves."

"[They] have absolutely proven themselves to be adults, with all the feelings that adults have, including sexuality and including the same desire that any adult has to have autonomy over their own bodies and lives."

Overwhelmingly, the disabled community - as represented by participants in Ouch's messageboard discussions - seems to want to claim Ashley as one of their own.

In other words, a disabled person whose human rights need to be carefully protected and whose fate has the potential to be shared by a much larger group of people.

[BlueStar]

Interesting. My immediate reaction was somewhere along the lines of outrage and disgust. However, I then got to this part...

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk.

That's a pretty severe disability and that kinda makes me understand the parents' actions a little bit.

Not surprisingly, the Disability Rights Commission (DRC) attributes the difficulties being experienced by Ashley's parents to inadequate social support.

If that were in place - the argument goes - there would be no need for Ashley to be kept in a permanent state of childhood.

I do agree that it is more a social problem. For example, if the parents could afford home care givers, perhaps they wouldn't have felt that surgery was the answer.

For Andy Rickell from pan-disability charity, Scope, the issue is one of fundamental rights.

"To make such a choice for their daughter is an abuse of this young woman's human rights and has worrying implications for other disabled people," he said. ...

Other Ouch readers worry that the case sets a dangerous precedent for, "carers being able to sculpt disabled people into something more convenient for t****.

And I do think the daughter's rights were, essentially, violated. I also agree that this sets a potentially dangerous precedent. It's definitely a slippery slope.

So, yeah, um, I really don't know either. I think, as the parents stated...

"Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

...you can't really say what you do in such a situation and you make think one way, but being in such a situation could change that thinking.

[Aeroplane]

Originally Posted by BlueStar

I do agree that it is more a social problem. For example, if the parents could afford home care givers, perhaps they wouldn't have felt that surgery was the answer.

Yes, I see the point here and agree with its logic; however, the fact of the matter is, the social problem persists and is pretty bad. So what are the parents to do in the meantime? Put aside the problem they have with their daughter to fight for social reform to make it better? No, they're struggling as it is. I think their motivation to involve their daughter in their family activities as much as possible is valid. Is it ideal? Hell no. We have the benefit to focus and debate on what SHOULD be and not what is - they don't.

Were her rights violated? I don't know. Possibly. But is this the best for her considering the state that our society is in? I have to lean towards saying yes. Is it ideal? Far from.

My sister has a son with Asperger's (a form of functional autism), so I'm sympathetic towards the parents. I don't think they're being selfish here by trying to make it easier for them to give their daughter the best care they can.

[RenewRevive]

I'd not heard of this, so thanks for posting it.

In such situations there is invariably no "right" course of action. It is an ethical amd moral quagmire and I feel for anyone with the misfortune to be involves, both the patient and the parents.

One thing to consider though: say Ashley was a normal adult, say 16 or whatever - physically mature, menstruating and was involved in an accident resulting in irreversible brain damage which rendered her functionally identical to Ashley X. Her parents want to look after her. Nobody would support such measures being undertaken (size would not be an issue, but the problems of maturity are still present). So is the situation entirely determined by her rights, or lack thereof as a child?

[myosis]

i think the biggest problem here is the media coverage.

[JokeyLoki]

I think this sets a dangerous precedent...

[GlasgowKiss]

Since the USA accepts circumcision i dont see a problem here.

[Mayfuck]

Oh, we're violating the rights of someone too incapacitated to be aware of their own rights. Big whoop. What's with people wanting to endow these "rights" to vegetables or virtual non-beings like Terri Schiavo, Ashley X or a fetus?

[TuralyonW3]

hmm. my mom cares for mentally retarded and autistic kids at school, I'll have to see what she thinks about this.

[Future Boy]

Midget 'tards are fine with me.

[KrazeeStacee]

Originally Posted by Aeroplane

Yes, I see the point here and agree with its logic; however, the fact of the matter is, the social problem persists and is pretty bad. So what are the parents to do in the meantime? Put aside the problem they have with their daughter to fight for social reform to make it better? No, they're struggling as it is. I think their motivation to involve their daughter in their family activities as much as possible is valid. Is it ideal? Hell no. We have the benefit to focus and debate on what SHOULD be and not what is - they don't.

Were her rights violated? I don't know. Possibly. But is this the best for her considering the state that our society is in? I have to lean towards saying yes. Is it ideal? Far from.

My sister has a son with Asperger's (a form of functional autism), so I'm sympathetic towards the parents. I don't think they're being selfish here by trying to make it easier for them to give their daughter the best care they can.

Exactly. I feel the most important thing isn't what other people think is right or wrong in this situation, it's about the parents - the people who gave birth to this child and who are responsible for caring for this child. I think it's great that they love and care for the child and if they feel that this is the best decision they could make then let them.

Besides they mentioned about her not going through puberty. That seems like it should be a bigger issue than it is - if she can't even sit up or hold a toy on her own I doubt she's ever going to need to be menstruating and going through all of that. I mean god, it's hard enough to go through that with the mental maturity of a 13 year old.

People are so quick to say what's right and what's wrong but you really have no idea if you would even do the "right" thing if you were in their shoes. They're not abusing her, they're not taking her rights away - the only right she needs is the right to be loved and supported by her family and that's what they're giving her.

[Mayfuck]

[Nimrod's Son]

they could pimp her out

[Nimrod's Son]

by this i mean the xhibit way

[redbull]

why is this news

[wHATcOLOR]

hey bluestar, aeroplane sucks as a poster, but he is clearly miles better than you. this is how articles are properly posted, ya bitch!!!

[RenewRevive]

Originally Posted by KrazeeStacee

Exactly. I feel the most important thing isn't what other people think is right or wrong in this situation, it's about the parents - the people who gave birth to this child and who are responsible for caring for this child. I think it's great that they love and care for the child and if they feel that this is the best decision they could make then let them.

No-one disputes their intentions, but this is not about them - it is about protecting her rights, clearly something Mayfuck thinks irrelevant as she appears not to be a real person. I applaud anybody who attepts to care for an afflicted family member, rather than foisting their problem on the state but someone should be taking the girl's side in a legal sense.

Besides they mentioned about her not going through puberty. That seems like it should be a bigger issue than it is - if she can't even sit up or hold a toy on her own I doubt she's ever going to need to be menstruating and going through all of that. I mean god, it's hard enough to go through that with the mental maturity of a 13 year old.

It seems like selective removal of her rights as an individual. The parents, after all this time probably see her entirely as an developmentally arrested child. They are talking about removing organs/body parts. It is unlikely periods would be any greater a difficulty than others she is facing. Advocates have a tendency towards over-stating the capabilities of the disabled, which can be tough for the able-bodied to understand, although listening to comments from the likes of Mayfuck, Nimrod + Future Boy gives me an idea of the sort of ignorance such organizations must face.

People are so quick to say what's right and what's wrong but you really have no idea if you would even do the "right" thing if you were in their shoes. They're not abusing her, they're not taking her rights away - the only right she needs is the right to be loved and supported by her family and that's what they're giving her.

This is basically a catch-all disclaimer for the "family knows best" approach. This is why impartial, informed advocates should be involved and I'm shocked that they don't appear to be.

[Future Boy]

Her mental state isnt in question, her parents benefit nothing, and a case can be made that her quality of life would be better after doing this, than if she didnt have it done. Where's the debate? It would be wonderful if she could have some say in things, but thats not possible.

[Corganist]

Originally Posted by Future Boy

Her mental state isnt in question, her parents benefit nothing, and a case can be made that her quality of life would be better after doing this, than if she didnt have it done. Where's the debate? It would be wonderful if she could have some say in things, but thats not possible.

I wouldn't say the parents benefit nothing from this. Obviously a big part of the procedure had to do with making their daughter's care easier on them physically. That's what the $64000 question is all about. Was the primary motivation for this procedure because it would improve her quality of care, or was it because it would make caring for her easier for the parents? I think arguments can be made for either.

Personally, I lean slightly towards the idea that this was a little excessive. I think the majority of the benefit in keeping her small goes to the parent's side. The girl will see some benefit too, but I'm not sure it's big enough to justify the somewhat radical measures taken here.

[Future Boy]

I actually meant monetarily. Of course it would make things easier for them as well. But its not like they were selling her kidneys or something.

[Smashing Turnip]

America's so fucked up, they so wouldn't be allowed to do that over here.

[GlasgowKiss]

Originally Posted by Corganist

I wouldn't say the parents benefit nothing from this. Obviously a big part of the procedure had to do with making their daughter's care easier on them physically. That's what the $64000 question is all about. Was the primary motivation for this procedure because it would improve her quality of care, or was it because it would make caring for her easier for the parents? I think arguments can be made for either.

Personally, I lean slightly towards the idea that this was a little excessive. I think the majority of the benefit in keeping her small goes to the parent's side. The girl will see some benefit too, but I'm not sure it's big enough to justify the somewhat radical measures taken here.

Since the USA thinks its alright to lop off a kids foreskin instead of having to address the fact that there is a very important part of the body there than needs maintenence and exploration i dont see a problem here.

[KrazeeStacee]

Originally Posted by RenewRevive

No-one disputes their intentions, but this is not about them - it is about protecting her rights, clearly something Mayfuck thinks irrelevant as she appears not to be a real person. I applaud anybody who attepts to care for an afflicted family member, rather than foisting their problem on the state but someone should be taking the girl's side in a legal sense.



It seems like selective removal of her rights as an individual. The parents, after all this time probably see her entirely as an developmentally arrested child. They are talking about removing organs/body parts. It is unlikely periods would be any greater a difficulty than others she is facing. Advocates have a tendency towards over-stating the capabilities of the disabled, which can be tough for the able-bodied to understand, although listening to comments from the likes of Mayfuck, Nimrod + Future Boy gives me an idea of the sort of ignorance such organizations must face.



This is basically a catch-all disclaimer for the "family knows best" approach. This is why impartial, informed advocates should be involved and I'm shocked that they don't appear to be.

The main point is that THEY'RE the ones who have to care for her, not any of these lawyers or "impartial, informed advocates". So what it all boils down to is that whether or not you believe it's right or wrong, these are still the people that have to care and love this child when all of you go home. So what if it makes it easier for them to care for her? Isn't that a GOOD thing?

Yeah it seems like a radical approach to the problem...but really it's just an organ that she's never going to use and so what if she's a foot shorter? How does that hurt her rights? So let them keep her uterus in her that cannot do any good for her, chance cancer, infections, and all sorts of other issues - along with having to have this child in the mental state she's in WHILE physically going through puberty. If you take a realistic approach, rather than an ethical approach to the problem - I really can't see how you can say that this is such a horrible thing and that they need to get other people involved. Once people get their ethics and morals involved, the whole thing turns to nonsense, IMO. Let these people care for their child in the best possible way for THEM since THEY'RE the ones who have to care for their child.

[KrazeeStacee]

Originally Posted by Corganist

Was the primary motivation for this procedure because it would improve her quality of care, or was it because it would make caring for her easier for the parents?

Don't you think that if it's easier for the parents then that makes the quality of her care better? I mean, unless I read that wrong that sounds like a pretty stupid question.

Originally Posted by Corganist

The girl will see some benefit too, but I'm not sure it's big enough to justify the somewhat radical measures taken here.

What radical measures? Do you know how many women get their uterus removed and get pumped full of hormones for other reasons? It's really not that radical.

[RenewRevive]

Originally Posted by KrazeeStacee

The main point is that THEY'RE the ones who have to care for her, not any of these lawyers or "impartial, informed advocates". So what it all boils down to is that whether or not you believe it's right or wrong, these are still the people that have to care and love this child when all of you go home. So what if it makes it easier for them to care for her? Isn't that a GOOD thing?

Agreed, her parents should have a major say in her treatment. But she not property and cannot speak for herself, hence the need for people who know what they're talking about to fight her corner. I'm not suggesting a bureaucratic entity imposing abritrary judgement.

Yeah it seems like a radical approach to the problem...but really it's just an organ that she's never going to use and so what if she's a foot shorter? How does that hurt her rights? So let them keep her uterus in her that cannot do any good for her, chance cancer, infections, and all sorts of other issues - along with having to have this child in the mental state she's in WHILE physically going through puberty.

But, don't you see this is a slippery slope? By way of example, a nine-year old developmentally challenged girl (granted, not by any means to the extent of Ashley X) was chained to her bed in a state-run Romanian orphanage for her entire life , because it made things easier for the staff. Before you jump on me, I'm not comparing them to Ashley X's parents. Just by way of illustration.

If you take a realistic approach, rather than an ethical approach to the problem - I really can't see how you can say that this is such a horrible thing and that they need to get other people involved. Once people get their ethics and morals involved, the whole thing turns to nonsense, IMO. Let these people care for their child in the best possible way for THEM since THEY'RE the ones who have to care for their child.

To talk also about it being simply a matter of right and wrong, as if this is excludes ethical and moral consideration I find puzzling. Just because the parents are dealing with the situation does not mean thay are automatically correct, either. Which is why objectivity is so important.

I'm not stating with certainty that the parents are wrong. I don't know. But it should be debated in a legal setting.

[Starla]

Reading that article made me nauseated. These parents are disgusting and sadistic on every level, not to mention selfish. When I signed up to be a parent I in no way signed up to discard pieces of my child should something be physically or mentally wrong with her, to make *my* life easier. This sounds like medieval medical practices butchering her. Why won't the mother just explain her real motives for the removal of her child's uterus?
And glasgow, not all americans are pro-circumcision. If my child had been born a boy, it wouldn't have happened, period.

[Starla]

Originally Posted by KrazeeStacee

The main point is that THEY'RE the ones who have to care for her, not any of these lawyers or "impartial, informed advocates". So what it all boils down to is that whether or not you believe it's right or wrong, these are still the people that have to care and love this child when all of you go home. So what if it makes it easier for them to care for her? Isn't that a GOOD thing?

Yeah it seems like a radical approach to the problem...but really it's just an organ that she's never going to use and so what if she's a foot shorter? How does that hurt her rights? So let them keep her uterus in her that cannot do any good for her, chance cancer, infections, and all sorts of other issues - along with having to have this child in the mental state she's in WHILE physically going through puberty. If you take a realistic approach, rather than an ethical approach to the problem - I really can't see how you can say that this is such a horrible thing and that they need to get other people involved. Once people get their ethics and morals involved, the whole thing turns to nonsense, IMO. Let these people care for their child in the best possible way for THEM since THEY'RE the ones who have to care for their child.

PUKE

[Starla]

She goes to school for disabled children

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk.

How is this child capable of attending school? I'm shocked that her parents would even bother with school. Why would she need it if she's in a mental state of infancy and cannot talk. School is more important than her bodily parts? I think the parents are fucked up.

[GlasgowKiss]

Originally Posted by To Starla

How is this child capable of attending school?

Since its the US school system i dont see a problem here.

[Starla]

This is taken from the parent's online blog, which they have set up to defend their choices. After actually taking the time to read it, I conclude that not only are the parents insane, so are their doctors who performed some of these procedures. And let me add, the doses of estrogen they are feeding her can still cause cancer. Regardless of whether she has a reproductive system anymore, it can cause cancer in the lymph nodes...but I'm sure the parents will probably have them removed next...since removing this child's appendix in case it ruptures.

The “Ashley Treatment”,

Towards a Better Quality of Life for “Pillow Angels”*

January 3rd, 2007*

By Ashley’s Mom and Dad

[email protected]

(Note to members of the media and our web visitors: We are getting more emails and requests than we can possibly handle-- more than 1500 in the 48 hrs since the LA Times story broke out. We want to attend to our lives and our kids as we should. This web site received more than*a million*hits and about 1000 comments were added in those*48 hrs! We truly appreciate the overwhelming support and the thoughtful comments we've been getting. Rest assured that we will read every one of your comments and they might be used in the future to help other families through a similar decision process.

Here are our key message points:

1. Ashley is doing well, healthy, happy,*and lovingly cared for.*
2. The "Ashley Treatment" is intended to improve our daughter's quality of life and not to convenience her caregivers.
3. Providing our daughter with this treatment was an easy decision since the benefits by far outweigh the risk and short term discomfort associated with the surgery.
4. We wrote the article and published this web site to inform and help other families of "Pillow Angels" who might benefit from our experience.
5. With the overwhelming thoughtful support that we are*receiving (90%+ of the comments and emails) we feel better than ever about what we did for Ashley, and we certainly do not feel defensive about it.
6. Please make sure to read the five emphasized paragraphs in the first two sections below, since they convey the essence of Ashley's story.

We hereby grant you permission to use Ashley's photos and to quote from our article as long as you clearly give credit to and ******* a link to this web site: http://ashleytreatment.spaces.live.com/blog)


Ashley’s Story



Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve.

Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our “Pillow Angel” since she is so sweet and stays right where we place her—usually on a pillow.

Ashley is a beautiful girl whose body is developing normally with no external deformities; see photos. She is expected to live a full life and was expected to attain a normal adult height and weight. Ashley being in a stable condition is a blessing because many kids with similarly severe disabilities tend to deteriorate and not survive beyond five years of age.

Ashley is alert and aware of her environment; she startles easily. She constantly moves her arms and kicks her legs. Sometimes she seems to be watching TV intently. She loves music and often gets in celebration mode of vocalizing, kicking, and choreographing/conducting with her hands when she really likes a song (Andrea Boccelli is her favorite – we call him her boyfriend). She rarely makes eye-contact even when it is clear that she is aware of a person’s presence next to her. Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists.

Ashley brings a lot of love to our family and is a bonding factor in our relationship; we can’t imagine life without her. She has a sweet demeanor and often smiles and expresses delight when we visit with her, we think she recognizes us but can’t be sure. She has a younger healthy sister and brother. We constantly feel the desire to visit her room (her favorite place with special lights and colorful displays) or have her with us wanting to be in her aura of positive energy. We’re often huddled around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit. As often as we can we give her position changes and back rubs, sweet talk her, move her to social and engaging places, and manage her entertainment setting (music or TV). In return she inspires abundant love in our hearts, so effortlessly; she is such a blessing in our life!

To express how intensely we feel about providing Ashley with the best care possible, we would like to quote from a private email that we received from a loving mother with her own 6 year old “Pillow Angel”: “In my mind, I have to be immortal because I have to always be here on Earth to take care of my precious child. Taking care of him is difficult, but it is never a burden. I am [his] eyes, ears and voice. He is my best friend, and I have dedicated my life to providing joy and comfort to him. To my last breath, everything I will ever do will be for him or because of him. I cannot adequately put into words the amount of love and devotion I have for my child. I am sure that you feel the same way about Ashley.”

The chance of Ashley having significant improvement, such as being able to change her position in bed, let alone walk, is non-existent. She has been at the same level of cognitive and mental developmental ability since about three months of age.

Faced with Ashley’s medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life. The result is the “Ashley Treatment.”

Summary

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 *******s 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.

Nearly three years after we started this process, and after the treatment was published in October, 2006 by Dr. Gunther and Dr. Diekema in a medical journal1 that resulted in an extensive and worldwide coverage by the press[2, 3, 6] and a broad public discussion4, we decided to share our thoughts and experience for two purposes: first, to help families who might bring similar benefits to their bedridden “Pillow Angels”; second, to address some misconceptions about the treatment and our motives for undertaking it.

A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.

Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.*

Ashley’s smaller and lighter size makes it more possible to ******* her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. *Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.

We call it “Ashley Treatment” because:

1-***** As far as we know Ashley is the first child to receive this treatment,

2-***** We wanted a name that is easy to remember and search for,

3-***** The name applies to a collection of procedures that together have the purpose of improving Ashley’s quality of life and well-being. Growth attenuation is only one aspect of the treatment.

The “Ashley Treatment”

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.

Ashley was dealt a challenging life and the least that we could do as her loving parents and caregivers is to be diligent about maximizing her quality of life. The decision to move forward with the “Ashley Treatment” was not a difficult one for us as most seem to think4. It was obvious that a reduction in Ashley’s height (and therefore weight), elimination of the menstrual cycle, and avoidance of large breasts would bring significant benefits to her health and comfort. The only downside that we could think of was the surgery itself; however, the involved surgery is commonly done and is not complicated.* Furthermore, we’re fortunate to have access to one of the best surgical facilities and teams at Seattle Children’s Hospital. If we were in a less developed locale or country with higher risk of surgery, we would have looked at this part of the analysis differently.

Since the “Ashley Treatment” was new and unusual, Dr. Gunther scheduled us to present our case to the ethics committee at Seattle Children’s Hospital, which we did on May 5th 2004. The committee *******s about 40 individuals from different disciplines and is evenly composed of men and women. After we presented our case we waited outside while the committee deliberated the issue. The committee chairman along with Doctor Diekema, ethics consultant, conveyed the committee’s decision to us, which was to entrust us with doing the right thing for Ashley. There was one legal issue that we needed to investigate related to “sterilization” of a disabled person. Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley’s case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so. Furthermore, “sterilization” is a side effect of the “Ashley Treatment” and not its intent.

The combined hysterectomy, breast bud removal, and appendectomy surgery was performed without complications in July 2004. *Ashley spent four days in the hospital under close supervision, and thanks to aggressive pain control her discomfort appeared minimal. In less than one month, Ashley’s incisions healed and she was back to normal; it’s remarkable how kids heal so much quicker than adults. Ashley’s Mom had had a C-section and knew first hand how Ashley would feel after surgery; thankfully, the recovery went much better than Mom anticipated.

Shortly after the surgery and recovery, we started the high-dose estrogen therapy. We’ve just completed this treatment after two and a half years. During this whole period, we have observed no adverse consequences.

Following we provide more details about the different aspects of the treatment and the related benefits.

Limiting Final Height Using High-Dose Estrogen

After the surgery, we started Ashley on a high-dose estrogen therapy using derma-patches that we change every three days. Estrogen advances bone age until separate growth plates in the bones fuse together, see photos, halting growth and determining the extent of height.* This occurs in both boys and girls.

Dr. Gunther sees Ashley every three months to monitor:

-********* Weight and height

-********* Bone age, by comparing her hand X-ray to a set of reference photos

-********* Estrogen level, and other tests, through blood work

Based on Dr. Gunther’s analysis, predictions, and estimates, this treatment is expected to reduce Ashley’s untreated height by 20% and weight by 40%. If we had started the treatment at a younger age, the benefits to Ashley would have been greater.

More specifically, at this point Ashley is 53" (4' 5"), (average for a nine and a half year old girl), and has a bone age of 15 years (see photos), which implies that she is about 99% of her height. When Ashley was 6 years and 6 months old she was 48" (4' 0"), (75th percentile for her age at the time).* Normal growth would have resulted in an adult height in the neighborhood of 66" (5' 6"), (Ashley’s Mom and Dad, are 5' 9" and 6' 1", respectively).* Therefore, the treatment is expected to produce a height reduction of 13 inches (or 20%).**Average weight of a 4' 5" woman is 75 lbs, while the average weight of a 5' 6" woman is around 125 lbs, so the treatment is expected to produce a weight reduction of 50 pounds (or 40%).

We are currently near the limits of our ability to lift Ashley at 65 pounds. Therefore, an additional 50 pounds would make all the difference in our capacity to move her. Furthermore, other than her Mom and Dad the only additional care givers entrusted to Ashley’s care are her two Grandmothers, who find Ashley’s weight even more difficult to manage. We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers.

The main benefit of the height and weight reduction is that Ashley can be moved considerably more often, which is extremely beneficial to her health and well being. Currently, one person can carry Ashley, versus requiring two people or a hoisting harness and ropes, should she have grown larger. As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long. In addition, the increase in Ashley’s movement results in better blood circulation, GI functioning (including digestion, passing gas), stretching, and motion of her joints.

Furthermore, Ashley remaining child sized has other practical ramifications such as:

1-***** She will continue to fit in and be bathed in a standard size bathtub. Since Ashley can’t sit, she needs to lie down in the bathtub. Without the treatment eventually she would stop fitting in a standard size bathtub and would need a different arrangement for bathing.

2-***** Ashley is more comfortable lying down and does not like to sit in her wheelchair, she fusses and cries if she is in it for more than a short time. We move her around the house while lying down in a regular double-stroller (we face the chairs together, cover them with a thick double natural sheepskin and set the back of one to a reclining angle). The system works remarkably well; however, Ashley is already at the weight limit for which this stroller is designed (two babies).

Recently, a doctor suggested that Ashley will be less prone to infections as a result of her smaller size. Bedridden individuals are more susceptible to potentially fatal infections. Both the reduction in size in itself, and the increased movement and resulting blood circulation are expected to reduce the occurrence and magnitude of such infections including:

1-***** Skin sores: larger body weight leads to pressure skin ulceration or bed sores, providing an inlet for deadly bacterial infections (another way to look at this is that adults are more susceptible to bed sores than children).

2-***** Pneumonia: increased body weight increases the pressure on the chest and reduces the lungs’ ability to expand, causing fluid build up in the lungs that increases the chance for pneumonia and breathing complications.

3-***** Bladder infection: similarly, increased body weight causes increased pressure on the bladder outlet, resulting in urinary retention and an increased risk for bladder infections.

These points make intuitive sense and so we decided to mention them; however, at this point we do not know of a study to reference that provides us with an objective and quantitative understanding of these benefits.

Hysterectomy

Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it.

The procedure involved removing Ashley’s uterus but keeping her ovaries to maintain her natural hormones.

Additional and incidental benefits ******* avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused, including a case mentioned in the discussion4. The hysterectomy also eliminates the possibility of uterine cancer and other common and often painful complications that cause women later in life to undergo the procedure.

Preventing Breast Growth by Removing the Early Breast Buds

Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her. This is especially true since Ashley is likely destined to have large breasts, given her maternal and paternal female lineage; for example, an aunt had a breast reduction operation at age 19. Large breasts are uncomfortable lying down with a bra and even less comfortable without a bra. Furthermore, breasts impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight. Before the surgery Ashley had already exhibited sensitivity in her breasts.

Though this step in the treatment might seem extreme to some, it is a simple procedure when the breasts are still undeveloped. This operation involved removing Ashley’s subcutaneous, almond-sized breast buds, which contain the milk glands, while keeping the areolas and nipples intact. This surgery was done with small incisions below the areola, the slight scars almost disappeared a month after the surgery. This operation is akin to removing a birthmark and is a very different surgery from a mastectomy on an adult woman with developed breasts. Furthermore, when done in conjunction with the hysterectomy this step poses little to no additional recovery time or surgery risk (for example, anesthesia is done once).

The breast bud removal has other benefits:

1-***** Avoiding the possibility of painful fibrocystic growth and future related surgeries. Women in Ashley’s lineage have a history of fibrocystic growth.

2-***** Avoiding the possibility of breast cancer. Ashley has breast cancer history in her family.

3-***** Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.

Of all the things we wanted to do to provide lasting physical comfort and quality of life to Ashley, the breast bud removal posed the biggest challenge to Ashley’s doctors, and to the ethics committee. We overcame this reluctance by detailing the benefits above, recounting Ashley’s family history of breast problems, and pointing out the fact that the same procedure is commonly provided to males for cosmetic reasons and to mitigate unwanted breast development (Gynecomastia). *In boys who might receive high-dose estrogen therapy in the future, breast growth will become an important consideration, and can be dealt with as in Ashley’s case.
SOURCE: http://ashleytreatment.spaces.live.com/blog/