Friday, January 05, 2007

The Ashley Treatment

Ashley is a 9 year old who lives in the Western United States (picture from a Daily Mail article). Her case has sparked a huge medical ethics debate having to do with rare medical conditions and parent's medical decision making ability for a child.

Ashley was born with a rare condition of the brain called static encephalopathy. What does this mean? The best way I've seen it described is a type of permanent brain damage. This type of condition is associated with a lot of disabilities like mental retardation, cerebral palsy, autism, and other similar conditions. It's been reported that she currently has the mental capacity of a three month old baby.

Ashley's parents, like other parents, were concerned about how they would care for a special needs child like this. But, unlike other parents, they took an unprecedented step to ask her Seattle doctors to perform what was described as "growth-attenuated" treatment.

Essentially, this type of treatment, prevents physical growth and keeps Ashley in her physical child-like state. Her parents made the argument that Ashley could be more easily cared for in this state. Ashley could be moved easily from place to place and she'll have a better opportunity to interact with other family members.

Who approved this radical treatment? Well, this was reviewed and approved by the hospital ethics committee before the treatments were done - including hysterectomy, removal of breast buds, and high does of estrogen to stunt her growth.

I just read an interesting article by Arthur Caplan, PhD, who is the director of the Center for Bioethics at the University of Pennsylvania:
I believe it is true that it is easier to move Ashley about if she is the size of a 6-year-old. But I also believe that a decent society should be able to provide appropriately sized wheelchairs and bathtubs and home-health assistance to families like this one. Keeping Ashley small is a pharmacological solution for a social failure — the fact that American society does not do what it should to help severely disabled children and their families.
Ashley's parents have a blog called The Ashley Treatment. I encourage you to check it out. As of this writing there are 568 comments, and the site states that they have had more than 400,000 hits in 24 hours:
We hope that by now it is clear that the “Ashley Treatment” is about improving Ashley’s quality of life and not about convenience to her caregivers. Ashley’s biggest challenge is discomfort and boredom and the “Ashley Treatment” goes straight to the heart of this challenge. It is common for Ashley to be uncomfortable or to be bored.

Even though Ashley’s level of tolerance has increased along the years, she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts. Also, without the treatment, Ashley could not be moved as frequently or be as included in family life, and we would not experience the joy of being an intact family as often.
I admit that my experience with this story is only the last hour since I've been reading up on this case. Plus, what you hear in the press never paints the entire picture. Who really knows what this family is going through?

But, I do know that a case like this could set a dangerous precedent. The first groundbreaking case usually is the most straight forward - and even that is debatable in this case. Now, people, particularly the legal system (sorry counselor curmudgeon), will start finding the grey areas.

Even though the parents deny it, the case will be built that Ashley was treated in this manner as a matter of convenience for the caregiver. So, the next child who is deemed to have "brain damage" and will be difficult to care for will now be eligible for The Ashley Treatment. Think I'm crazy? Possibly. But, mark my words, this story is just starting and will play itself out throughout 2007.

Ethics always lags behind science. When that happens, the legal system and possibly even the government get involved. And, that's where things get ugly. Things get more political. The activists with political agendas get energized. I won't be surprised if this very issue is inserted into the 2008 US Presidental campaign - Remember Terri Schiavo and the end of life debate? Remember Michael J. Fox and the stem cell debate?

I'd better stop before I really get going on a politics/government rant. I mean, this is a medical blog, ya know. Sheesh! Have a nice weekend!

Update 5/9/07: The hospital admitted that it should have obtained a court order before proceeding with the surgery. Read the update here.


Anonymous said...

I haven't really read your blog before, but the Random Blog button brought me here, and I read your latest blog entry and wanted to comment. Now, I have no medical background, so I can't really comment on the medical aspect of this article. I don't know the ins and outs of the surgery that this girl has gone through...I'm basing my ideas on my basic knowlege of ethics and my job as a caregiver for those with special needs.

On one hand, the part that has worked with children with developmental disabilities like Ashley (though, not as severe) I can sympathize with her parents. It can be very challenging to have a mentally handicapped person who isn't able to do much at all for herself...and when they become full grown it's especially hard. Some can be quite aggressive without meaning too, some are just unresponsive which makes something as simple as trying to feed them, or change them can turn into a major ordeal because of the fact that they are so big and you can't really pick them up as you would a baby or child to assist them with whatever needs to be done.

Ethically however, I am disturbed by the surgeries this girl has has to endure. As I said before, I do not know anything about the surguries that were performed on her, but common sense would tell me that at some point this girl was in pain from the procedures. Even if she functions on an infant level she still can experience pain and fear and it doesn't seem fair to submit her to that when it wasn't medically necessary and that she wasn't able to consent to the procedures.

Pieces of Mind said...

I visited the family's blog and also waded through some of the comments at MSNBC.

I find this whole situation disturbing on so many levels, and I am very ambivalent about it.

I think society pays lip service to the concept of caring for the most vulnerable among us. We admire the heroism of parents who care for children with disabilities, yet we don't want to be burdened with making it easier for them, especially if it involves our precious tax dollars. I can't imagine the challenges they face.

In fact I would venture to guess that this is the first time most of us have really had a glimpse of what it's like to care, day in and day out, for a family member with severe disabilities. Out of sight, out of mind.

Yet at the risk of sounding like an armchair psychoanalyst, I can't help being a little disturbed by what the "Ashley treatment" reveals about the parents and their mindset. This is a young woman we're talking about, and it seems as if she's being infantilized as a "pillow angel" and a little girl, both literally and figuratively speaking.

Regardless of her level of functioning, she is first and foremost a human being. And it seems like an affront to her human dignity to medically intervene to prevent her from growing up - in effect desexing her and permanently making her Mommy and Daddy's little girl.

I think we often infantilize those who are elderly or who have physical or developmental disabilities. We treat them like babies and it can be really demeaning. It strikes me that the Ashley treatment is the ultimate manifestation of this, and I admit to being disturbed by it.

I also agree with Silverneurotic that this young woman has been subjected to invasive, drastic intervention without being able to consent. I also have to wonder what the long-term medical fallout might be.

I'm not in the parents' shoes so Lord knows I shouldn't be overly judgmental. The whole situation is heartbreaking... and very, very disturbing.

Dr. Deb said...

This is distressing on many levels.

Anonymous said...

Doc, let me send you a link to another site that I visit regularly, A Work of Art: Raising Our Exceptional Son.

Bennie is the father of Ben, age 7. Ben has an "extremely rare genetic disorder scientifically known as Tetrasomy 12p. The related syndrome is called Pallister-Killian Syndrome (PKS)."

Bennie's been following this story, too, and he has a unique perspective. And he's pretty angry at how the story has been handled by some in the media (especially CNN, as you'll note immediately if you click over). But I think you may find what he has to say interesting.

I'll tell you what I told Bennie: Sometimes there's no good choices and you have to choose the least bad one.

And as to the reference, no offense taken: If everything was black and white you'd probably never need lawyers -- it's distinguishing among shades of grey where we may be most useful. But I don't see this hard case becoming a big political issue: Unlike end of life issues which come for us all, cases like Ashley's are -- fortunately -- very rare.

Muddy said...

As for the girl not giving consent to the surgeries..

I dont think most parents ask the child for permission or consent when considering what is in the best interest of the child...whether it is a surgery or some other procedure (medical or not). Whether it is going to hurt or not also should not come into play. If a parent, acting in the best interest of the child under the advice and expertese of their doctor(s), makes a choice for surgery, it is not a decision taken lightly.

As parents, we make the best choice we can, with the resources we have. It doesnt sound as if Ashleys parents went about this lightheartedly or without weighing it totally. They did not make this choice alone, but together with a team of medical professionals. (and also after the procedures were reviewed by the hospital ethics board).

I'd rather just take it for what we are told...that the parents were acting as most parents do-in the best interest of their child, trying to find a better way of handling what is a challenging situation most of us will never know.

Anonymous said...

Wow that is a slippery slope. As a society we open ourselves up to many opportunities of abuse of something like this. I must believe that the parents chose this course of action out of pure love for thier daughter. But wow many peopel could use this as a way of altering circumstances to their own benefit. I am glad you reference the post from the doctor on ethics. That's what it boils down to. Oh my. This makes me nervous.

BTW....Part 3 of the "Wolfden Bar and Grill" is up at my blog...go check it out and see what you get up to in this episode....


Anonymous said...

It's definitely a controversial issue. In my particular field, I often witness just how devastating the daily care of a disabled person can be for aging parents--and I do sometimes see people resort to "desperate" measures as a solution for ensuring the best possible outcome.

Anonymous said...

As a gynecologist I have done a number of hysterectomies on handicapped women for a number of reasons, not the least of which is the likelihood that they will be impregnated when the parents have to relinquish them to long term care programs when the child outlives them. I have cared for one of my patients who struggled at the age of 70 to lift and move around her 50 year old "child." Is a feeding gastrostomy an unwarrented interferance with the childs nature and right to taste and inhale his/her food and get frequent pneumonia. Tendon procedures that let the child be more comfortable but also improve the parents ability to move the kid and fit them into a chair. I would expect that damn few of the complainers would be willing to take over the lifetime care of a totally and permanant care of a dependent child/adult. I am sure that there are some dedicated caregiver who dissagree and they are entitled to their opinion but I think most people would be unwilling to put their lives where their mouths are.

Anonymous said...

This is not a case of an elderly couple taking desperate actions. This is a case of a set of parents making a difficult choice to accommodate the comfort and well-being of their child.

Sorry Curmudgeon. I hope you know I'm not stalking you. I'm getting some wild links today that I'm chasing down so I can defend the decision of the parents.

There has been some good things expressed here in particular the comment about most folks avoiding the issues facing the families of special needs loved ones unless there's some big hoopla in the news. Unfortunately Doc Anonymous nailed the given situation right on it's overblown head. The media has sensationalized this story and twisted comments made by the parents and even educated physicians to get what they want: an avenue to sell their story.

I truly wish everyone would READ THE ENTIRE POST WELCOMING YOU TO ASHLEY'S BLOG. Although my son functions at a higher level of intelligence there are so many other connections we have with Ashley's parents.

I can argue their point until I'm blue in the face. You can read my thoughts at our blog and those of Ashley's family at theirs.

And while I somewhat understand the ethical arguments against the procedure, until you walk in our shoes for awhile you have no right to judge those of us who are acting in the best interest of our children.

The Curmudgeon is very wise in his advise to me (I hope I'm still not on the clock). We do what is best for our children with the best available technology.

One last thought: I love the blog! I'll be back.

Anonymous said...

Wow. That poor girl. I agree that it is very distressing on so many levels. I can't even imagine what the parents and Ashley must be going through.

Anonymous said...

Have you heard of Blog Hopping? I've just hopped to your site. Come visit MINE where I've left a link to YOURS! (This is NOT an ad.)

Unknown said...

Hi Doc,

Glad you decided to tackle this. I saw a segment about Ashley this morning on CNN and it bothered me deeply. It's scary, to be sure. I see the ACLU or NOW getting involved before all is said and done. Or worse yet, our government.

Interesting post.

Cheers and Happy New Year to you!

Anonymous said...

I have to say, it's very disturbing to me that we would do surgery on someone who is physically normal to improve the parents ability to care for that person.

I don't know if the parents' attitude disturbs me more or if the fact that we live in a society where they can't get appropriate assistance to care for their severely disabled daughter disturbs me more.

Anonymous said...

They did a piece on this on the radio today and I've got to say I don't really know where to come down on it. On the one hand, I think there's something wrong with genetic manipulation. On the other, the parents didn't make this decision overnight, and it seems that they did so after a lot of thought and that it's what it best for them. Gah, headache.

Anonymous said...

i don't know what to say. this is just so confusing to me, and i'm only reading about it. how much more to the parents involved, who are actually living the debate?

Anonymous said...

The way I see it...

They weren't trying to make their life with their daughter more liveable...

They were trying to make her more loveable...


GaffLady said...

well this one is really disturbing and i can't put my finger on what is bothering me the most.

Anonymous said...

Hi. Grateful 4 introducing this ashleytreatment blog n ur easy to understand piece on the subject. Thk U.

Anonymous said...

i keep thinking what will happen when the parents cannot care for her any longer. she outlives them. sigh.... i just don't know what i would do if i were the parents, but i do know that whatever they decided i would support.

Anonymous said...

You wrote,
Keeping Ashley small is a pharmacological solution for a social failure — the fact that American society does not do what it should to help severely disabled children and their families.

Thank you. That's it, in a nutshell.

And I agree with you that this story will continue to play itself out in coming months. I hope to read more from you when it does.

Dream Mom said...

I am disturbed and angry about this case as well. I just posted a new blog last night on it as well.

As for Anon 659, I suggest you read my latest post. I am the mother of a severely disabled teenage son living the life that Ashley's parents find problematic. This is a barbaric solution to common issue of being able to lift these children and care for them. I make no apologies for being devoted and passionate about caring for my Dear Son. I think there are a lot of other solutions to this issue and it's just plain not right. Perhaps you need a different perspective. You can click on this link to my post:

It's not normally my style to refer someone to my blog in a comments section however this issue needs to be understood and it needs to be told by the very people who are severely disabled or their advocates, who are typically their parents.

Good post, Dr. A!

Anonymous said...

It does sound like the classic slippery slope arguement. This was the first time I had looked at your blog and I shall look forward to reading it more often.

Dr. A said...

Because it did not come through above, here is Dream Mom's Post on this topic. It is very well done and gives you an inside perspective of someone taking care of a special needs child. Thanks for your comments!

Anonymous said...

I have worked with developmentally disabled adults in a "previous life" and followed this story with interest because of that. I really don't know how I feel about it. I do like that you pointed out how it represents society's failure to support the Ashleys and their families. I hope that this story raises people's awareness of that issue, if nothing else.

Anonymous said...

Did anyone ever consider the difference between changing a dirty diaper of a fully gown man and that of a little boy? Mature male and female genitalia, sitting in pee and shit, is disgusting to change- not so much in a child. Hmm, and no one wants this job? The parents can't find anyone who wants to do this day in and day out? I wonder why?

dr. nic said...

I'm glad to see other medbloggers talk about this. I had a fairly long post on my own blog about it. My gist is - her parents did what they thought was best. I'm not sure if I agree with their decision, nor do I like the precedent it sets. In the end, they made the decision, and its up to the medical community and the rest of the world to make sure ethics catches up to science.

Anonymous said...

To those who believe no one else's opinion can possibly be valid unless they have a child with severe disabilities:

I get where you're coming from, but only up to a point. As a parent, your emotions are so involved that you can't always weigh your decisions objectively.

There's *nothing wrong* with that. But in cases like Ashley's, maybe what was needed was an objective, outside point of view from someone who would not be emotionally involved.

I put no stock in the fact that the hospital's ethics committee reviewed it and gave it the go-ahead. Hell, it was publicity for them. Their names were going to be on a scholarly article.

I would feel better about this case if I knew the child had an independent advocate who was specifically assigned to her, who took the time to visit her, get to know the family's situation and adequately and objectively represented her during the decision-making process. I also think it would have been a good idea to get another ethics consult from an outside organization. Too late now, I guess.

A couple of final questions:
If Ashley had been a boy, would we react the same way if the parents had decided to remove his testicles and give him megadoses of estrogen?
If this had been a family on Medicaid, would we react the same way to a decision on how thousands of tax dollars were spent?
Does the fact that this is a college-educated, well-spoken family and the fact that Ashley is a girl make a difference in how we view this case?
Think about it.

Anonymous said...

I am a mother of an 18 year old daughter with cerebral palsy and I do understand. It may be radical but when people say that is not fair to the child, that is not so. I may not have chosen this for my daughter but I do understand. I am older and she is bigger and more emotional and it is a problem. My daughter is at the level of an 8 month old baby. Until you walk in our shoes, it is best not to comment. If people really want to help, petition the government to help the special needs more because God knows we need more assistance. I work hard and hold 2 degrees but I have not had any help from our gov't because I am not poverty level and our gov't is not there for parents like myself. Also, the gov't prefers we put our children in nursing homes instead of assisting us with a caregiver. What gives in America. So, all these critical people, you do not know the hardship that it is and I do understand because the child cannot make the decision. Would she be treated better in a nursing home. I do not think so.

Anonymous said...

That we now can physically alter our children to suit not only their quality of life but our own is the larger concern for me, not Ashley, in particular.

I will not follow the Ashley story but I know this. I will definitely be keeping my eye on other such cases.
I'm yet undecided on how I feel regarding the extreme measures taken by Ashley's family. I know, I know. I read their blog twice. Very touching. On the third read, I found it less convincing.

I'm not making judgements. I'm only concerned that with the help and support of the medical community we can, if we're convincing enough, physically permanently alter our children. Right here in the U.S.A., too. And even more shocking at a hospital I'm very familiar with, almost within a stones throw from me.

On the other hand, I can't ignore the fact that most of those dissenting are parents of normal and healthy children. I don't think I read one comment from a parent of a disabled child that didn't support the Ashley Treatment.

Regards, and thank you for allowing me to post on your blog. ~acadine

Anonymous said...

At Friday, January 05, 2007 5:51:40 PM, Muddy said...

My Response----------- I agree with Muddy. Ashley's body and reproduction organs growing will only cause her even more problems. Besides, she will become even more physically taxing on her family. Then, what if she greatly outlives her parents and whatever other "loving" family members who may help to care for her? She would be a big grown baby-woman, existing under the care of others. Her brain would be like a baby, but her body, and it's functions will be that of a "fertile" woman! Think about it; there are many "abusive, sneaky, devilish" people who're actually caring for other people! Ashley does not need any of those things that were removed from, or kept from, her! Thank God for Ashley's loving, sensible, and I'm sure, very tired parents. And, thank God for those doctors!

Anonymous said...

Although I have been reading all sorts of blogs on this issue (including half the people who have responded here!), this is the first one on which I have commented, mainly, Doc, because you ARE a doctor.

We have been discussing this in my classes (I teach A&P) and I understand the parents/doctors' decision in removing the uterus and breast tissue prior to hormone therapy, as the high doses of estrogen needed to close the growth plates would also stimulate breast growth and hasten menarche.

My curiousity is in this - a number of bloggers all over the web have stated that if Ashley were a boy, the parents would not have made the same decision.

Male growth can be halted through administration of high doses of testosterone, yes? Estrogen, however, causes a quicker response. Should this treatment be given to a male child, estrogen would cause breast tissue growth as well. A course of testosterone would probably be a better choice for a male child.

This, however, would also result in a variety of side effects - the least of which would be lowering of the voice and an increase in muscle mass.

These could be at least partially mitigated by co-administering estrogen. Therefore, if a male child was to undergo this procedure, the need for tissue removal due to secondary effects of the hormones would not really exist. (Although it may be desirable to perform a vasectomy/seminal vesical removal/prostatectomy to eliminate spontaneous emission and the potential for prostate cancer. Contrary to some commentary, the testes would not need to be removed, just as Ashley's overies remain in her body.)

Am I correct in my medical interpretation? I understand that you may not be and are probably not an endocrinologist but you probably have more access to this sort of information than I do.

This has been a question raised by my students and I am unsure how to answer it.

Dr. A said...

Faithmrose, Thanks for your comment. I've been asked a lot about if this were a male child. And, you're right, I'm not an endocrinologist.

I've been reading a lot of conflicting information regarding high dose testosterone and the haulting of growth. Much of the material I've read make the same assumptions that you have. However, I'm not quite sure how high the dose would have to be to achieve the goal of stopping the physical growth of the child.

So, I guess what I'm trying to say is that I do not have a definite answer as far as the physiology effects and treatments if this child were a male as opposed to a female. My apologies to you and your students. Sorry I wasn't much help.

Anonymous said...

Interesting. My guess is that sooner rather than later, we will probably find out, because apparently a number of additional families have come forward to ask for this type of treatment (so says the media, in any case).

I too have been looking through the literature for this sort of information - actually I am quite happy that this case has come up, because it provides me with a sneaky way to discuss the endocrine system without sounding like a bore!

I suppose this is an opportunity for the medical community to educate the masses on that sort of thing as well. Thus far, most of the people I have spoken to, although initially opposed to the treatment, because at least more accepting of it once the physiology of it was explained, even if they still did not agree. They at least understood some of the reasoning behind the various decisions.

Anonymous said...

To those who believe no one else's opinion can possibly be valid unless they have a child with severe disabilities:

I get where you're coming from, but only up to a point. As a parent, your emotions are so involved that you can't always weigh your decisions objectively.

Excuse me? You've got to be kidding, right? Also the rest of your comments meander toward a racist statement. Are you suggesting that we wouldn't be having this discourse if an uneducated single black woman chose this procedure?

I would venture to guess we are the most objective parents on the face of the planet given our situation of raising a viable living being in an absurd world. We parents of the most severely disabled face more choices each morning than you do before you decide to hit the snooze button 14 times.

Our job requires a clarity that none outside that existence will ever know. None! this is why I profoundly disagree with Dream Mom. Both she and I are parents of boys.

If you want "in your face" like another Anon's comment about shit then here is the scenario Ashley's parents would face.

How do you feel about changing a diaper that includes feces, urine, and vaginal bleeding? then the question of puberty - onset at the tender age of 6. All what that entails is to be digested by a child's mind (regardless of her age).

Do you who chooses to stand behind their anonymity want to step up and change those diapers? Does Real Mom want to sit and hold that little girl for hours on end while her body changes rage against her? Do the rest of you begin to see the REAL picture here and not the one being told on Nancy Grace?

Anonymous said...

I am not sure what to think about this case. I will point out three logical fallacies that I see being used in the comments here:

1.) slippery slope fallacy
2.)the "unless you've been in my shoes" fallacy
3.) the use of emotional rhetoric and intimidation tactics (let me disgust you by overwhelming you with the gory details).

Arguments would be so much better if they were conducted rationally. This is a question of how we decide basic ethical issues. It seems to me that the argument in favor of the "Ashley treatment" is utilitarian. The argument against the "Ashley treatment" is based on the notion that there are certain inviolable rights of a human being and that the mutilation of a human person should be done unless medically necessary. So, the question is: what reasoning do we use? Utilitarian or Natural law/rights?

Anonymous said...

I meant to say "mutilation of a human being's organs should not be done unless absolutely necessary..."

Anonymous said...

I view the argument to be 'the security of a certain level of life quality in the future' for Ashley- which is a civil right/human right. Not sure which one. I never took debate class.

Anonymous said...

How can any of you judge these parents and doctors for what they have determined to be ethical and most importantly beneficial to Ashley's quality of life. She is basically a 3 month old child and will, cognitively, never be anything more. She does not have the mental capacity to understand what will be happening to her as she grows. If any of you have spent the time caring for a severely disabled person it is physically, mentally, and emotionally draining to ALL involved. How dare you judge these parent for trying to do what they think is best for their child. Think about how we would all feel if we were judged for the decisions we have made while our children are growing up. All any parent wants is for their child to have the best quality of life a parent is able to give. I could not imagine having to make the decision Ashley's parents have had to make but I could see myself possibly doing the same thing in their situation. As far as her comfort level after these surgeries if you read the parents web site and if you have ever worked with post-op patients then you know that Ashley was given aggressive pain management as do most post-op pt.s.

Anonymous said...

Challenging issues and a challenging discussion.

Saddest to me is the noise level and the rhetoric on both sides. I am appalled at how Ashley's family has been vilified by people who really have no clue. Many of the comments on other discussion sites have been cruel and uncalled for.

But I'm equally dismayed by the attitude that outsiders have no right to have an opinion on the decision of Ashley's family unless they have walked in their shoes.

This issue has hit a nerve. Maybe that's good. Maybe it'll get people talking about what society can or should do for these kids. I personally think it's beneficial not to limit the dialogue to those who have "walked the walk;" if you want to educate the rest of us, here's your golden opportunity.

Recognize that there can be a spectrum of opinion on this issue. Reasonable people can disagree and do so with respect.

But we're not going to hear each other unless we dial down the noise.

Anonymous said...

I have no respect for the rants against Ashley's parents. We live in a "first world" society here in the USA, but can't care adequately for people with these kind of disabilities, where cops can't deal with mental illness and incarcerate when confronted by "law breaking" behavior. We are even so nuts that we dropped over 100,000 soldiers in a country of over 20 Million Muslims, in a sea of over a billion Muslims, most of which only tolerate us (they like our money) and a fraction hate us, so we could impress democracy and freedom on them, who don't really want it. Phew. Gulp. Sorry for the run on sentence. What's wrong with this logic.

Ashley's condition and her parent's brave moves to handle it are a refreshing break from this mold.

Anonymous said...

I have a daughter, Alyssa, who is severely disabled. She is also really tiny - naturally. She will be 13 years old tomorrow, and is about the size of a five or six year old. She can't walk or talk and she will always wear diapers. She is higher functioning than Ashley - she can crawl and she can play with certain toys. She can feed herself Cheerios.

Alyssa has been my greatest teacher in life, and I have learned a lot of lessons through her. I've learned about things that I may have never thought about had she not been born. I am really very thankful to her. I adore her, and smile when I think of her.

But there are the day-to-day realities that I have to deal with as her mother. Sometimes, to tell you the truth, it is just really, really hard. Sometimes, I cry about it.

As she gets older, it does get harder for me. I wonder about what it will be like when she gets her period. And I worry about getting a bra on her and how she will feel when her breasts grow since she has to wear a full body brace. Will the brace hurt her? I don't know. How will she look if she's four feet tall and a "C" cup? I don't know.

There are decisions that I have had to make that others might not have agreed with. And that is okay. I can only do my best. I am faced with having to care for Alyssa for the rest of my life. Forever to me. And then, when my husband and I die, what will happen to her?

I worry.

I can understand why Ashley's parents made the decisions they made. They say that they made these decisions for Ashley's comfort and quality of life. I believe them.

Others think that they made these choices out of convenience. Many of the people who believe this way are vehemently opposed to the actions that the parents took.

Some people are looking at this as a crime against women.

I don't know. It seems that everybody has an agenda.

All I know is that when you're the parent of a severely disabled child, you are faced with lots of decisions that the general public will never know about. Oftentimes, you are swinging between a rock and a hard place. And you just end up black and blue.

Anonymous said...

(At Saturday, January 13, 2007 2:12:35 PM, dki617 said...)
In response: God bless you and your daughter. I know exactly what you're going through in watching your child and caring for her. My daughter's post toddler daughter is severly autistic and I help with her care everyday and night. Thinkng of these kids' future is the most extreme worry. My daughter & s-n-law don't have it easy watching their child struggle, though, her condition is nothing as extreme as Ashley's. I commend Ashley's parents for doing what's best for her, as I pray for all of them.

Anonymous said...

If Ashley's parents can not afford caregivers to provide Ashley with better support, they might have opted not to have more children to make the financial burden more bearable, rather than hacking off her body parts.

Incidentally, I'm not clear as to why they didn't remove her limbs. After all, just as she has no use for her uterus and breasts, she can't use her arms or legs. And isn't she far lighter and easier to position without them?

Anonymous said...

Some family breast cancer and painful cystic breasts were listed as a reason to remove Ashley's "breast buds."

Why not remove Ashley's "normal" sister's as well? Why only the mentally handicapped child?

Same with the potential for period cramps and uterine cancer - both would apply to Ashley's younger sister - why not include her in the surgery?

It's really disgusting how far parents will go for their own convenience masquerading as what's "best for the child."

The parents simply wanted an easier job taking care of her and her natural physical body developing seems to have been uncomfortable for them - so they found a hospital with the most unethical committee around and got them all on the bandwagon.

Anonymous said...

Some family breast cancer and painful cystic breasts were listed as a reason to remove Ashley's "breast buds."

Why not remove Ashley's "normal" sister's as well? Why only the mentally handicapped child?

Same with the potential for period cramps and uterine cancer - both would apply to Ashley's younger sister - why not include her in the surgery?

It's really disgusting how far parents will go for their own convenience masquerading as what's "best for the child."

The parents simply wanted an easier job taking care of her and her natural physical body developing seems to have been uncomfortable for them - so they found a hospital with the most unethical committee around and got them all on the bandwagon.

Anonymous said...

That Ashley's parents have received any support whatsoever is most troubling.

Yes folks, bring your severely handicapped to the closest facility, regardless of age.

Remove womens' uterus', their breasts; after all, they don't need them. And the men aren't safe either, no sir. Castrate them so they cannot become accidentally aroused, thereby welcoming the sexual misconduct of a caregiver.

If this is what "good" parents are doing these days.....

Anonymous said...

Ashley's normal sister can develop an adult brain and make the decision to remove her breasts due to the cancer risk, especially if she is positive for the breast cancer gene. Women have and will continue to do this.

and Ashley's parents didn't want to leave her at a facility, that's why they are doing this. the money they are spending to do this is money people like you two didn't want to pay in taxes so they can help from their community.

Here's an idea, all you people opposed to this operation and praying violence against the parents, set up an account where you can give money to them to hire a caregiver for the rest of her life (at least 60yrs). Or ask for a tax increase so that there can be more social service. basically, why don't you put money where your hateful mouths are.

Anonymous said...

As someone who has been both a caregiver and a physically-challenged person, I believe that Ashley's parents made a bad (unethical) decision. Yes, it is extremely difficult to care for people who are "vegetables," as society likes to call them. And there is very little support for caregivers, and nursing homes suck.

But permanent sterilization of a disabled person is unethical and can get you into all sorts of legal nightmares, especially since many advocates do it with eugenics in mind. If they sterilized her just to not have to look at menstrual blood, why not use Mirena or Norplant or Depo-Provera? Why is menstrual blood so much more disgusting than feces and urine? Why not do breast reduction only if necessary in the future, rather than complete breast removal? Why keep her small just so you can supposedly avoid bedsores? I was taught in school that bedsores are a sign of negligent care...of course, reality doesn't align with theory and I had the worst time trying to get my infant son's skin break-down in the diaper area to heal (and he weighed less than 20 pounds at the time!) Yes, lifting 125-pound adults in and out of beds and wheelchairs can take a toll on a parent's body (a friend's back was wrecked by caregiving for 2 adult sons with a muscle-wasting disease.) But if you can afford medical treatment/surgery to stunt growth, you can afford an electric lift for transfers. If you can afford surgery to remove breast and reproductive tissue, you can afford routine diagnostic testing for breast cancer or cysts or any other condition that might or might not occur in the future.

Ashley is a human being, a person, who has inalienable rights. She is not a blob of tissue for conducting experiments on, or treating like a baby forever. And the "pillow angel" phrase disgusts me. We who are differently-abled are not angels, we are humans; and we get angry and have bad days and bad moods just like every other human being.

Anonymous said...

As a parent of a child with severe/profound developmental delays, cognitively and physically, much identical to Ashley's, I can completely understand the reasoning behind the decision that was made by Ashley's parents... even with my child being a boy.

For years, I have prayed to God to slow down his growth so that I may continue to care for him and have him continue to enjoy me holding him and carrying him and playing airplane with him, etc.

Although my son is six years old, he, as well, is at about a 3 month development level, and most likely, he will not progress much from here. He also has a G-tube and fundo, and requires 24 hour round the clock care for all his daily living care and medical needs. The doctor has told us that most likely, my son will be of normal height and weight, yet, his muscle tone is too weak for him to ever sit, stand, or even walk and is non-verbal… and his father is 6ft tall.

My son could be Ashley's twin "pillow angel." For anyone that has had the pleasure of meeting him, he could probably be called the "angel of smiles." My son is never without a smile.

As my son gets older and bigger, he will not be able to enjoy the simple things that he can do now, as in rolling over or moving about as he wishes. Already he expresses frustration as he tries to turn over at times, but cannot because now his body weight is more than he can control due to his low muscle tone.

When I first heard of the "Ashley Treatment," I thought that God had heard my prayers... where can I go to sign up?

It is more than just not having or finding resources for the parents or family, it really is about the safety and quality of life for the child and the family.

And if some disagree with this, then obviously, the system has failed for parents to have to resort to this type of option.

I think that many are afraid of opening Pandora's Box, but, I think that we should not criticize the parents for wanting to personally take care of their child and enjoy her life as well as Ashley enjoying life, instead of leaving Ashley to the system or putting her in an institution.

I think that it is great that there are so many child advocates, but please do not narrow your scope of vision by just looking at the child, but look broader, looking at the whole picture, the quality of life as a whole for the child and family.

Due to possible misuse or abuse of this type of treatment, there needs to be some sort of screening. There should be guidelines or qualifying criteria for applying for this type of treatment... but I think that this should be an option for some parents.

Why does society find giving growth hormones to children to be acceptable? Is this not playing with mother nature as well?

Why does society find it acceptable to put a male infant under so much distress soon after going through the traumatic experience of birth by circumcising him when circumcision can be performed at a later time when the child can consent on his own?

And when we look at new unexplored procedures for certain cancers or surgeries, are we not told that there are risks and unknowns and that there could be fatal outcomes or permanent/irreversible damage, yet as parents, still take the risk and pray to beat the odds in order to help increase the lifespan and quality of life for the child?

Or even medication… do we ever ask the child if they want to take the medication knowing that there could be side effects?

For the majority of most parents, do we not make decisions in the best interest of our child?

I just cannot imagine that Ashley's parents made this decision for Ashley lightheartedly as I have read the assumption of many posted comments.

No two individuals are alike, as no two fingerprints are alike. No one can ever truly understand what Ashley's parents are going through or thinking without actually being them, even if you are a parent of child with special needs or have disabilities yourself.

And something to think about for women who are upset with Ashley's parents for taking measures to prevent Ashley from menstruation or growing breasts... just imagine what it would feel like if you had to wear a full size diaper during your menstruation cycle and could not change your diaper until someone else changed it for you, even if it is one of your "heavy" days, and you had to just lie in bed with a bloody diaper. It is bad enough having to wear diapers, but think about how everything will be mixed with blood. Surely you were not thinking that Ashley can just go and wear a Stayfree or Always or even Depends... or heaven forbid, O.B. or Tampax? Where is the dignity for Ashley for someone to be constantly viewing her privates and cleaning it during her menstruation? Can we not view the decision by Ashley's parents as menopause coming early for Ashley? Were some hopeful and wishful for Ashley to be a mother one day? Or feel the pleasures of what being a woman is like? Come on... let’s be honest and ask ourselves… if you were Ashley, and bedridden all day in diapers, would you want to be menstruating? I doubt it. I would love to see a count of hands of all the women who truly enjoy the menstruation cycle and look forward to it every month… unless you are praying not to be pregnant from an unexpected happening.

And regarding her breasts... I just do not know what all the infatuation is about women’s breasts, unless we are thinking in sexual superficial implications. We should not judge Ashley’s womanhood based on whether she will grow or not grow breasts. Let’s think about what the purpose of breasts are… production of milk for the purpose of life… but since Ashley will not be part of the reproduction cycle, then I think that Ashley will be beautiful even without breasts.

For those who are living with disabilities, yet still disagree with Ashley’s parents… you, too, cannot relate because you are not Ashley… but instead, you are able to think and read and make comment, no matter what your challenges may be. As I mentioned before, this type of treatment is not for everyone, and not everyone should qualify.

I feel very saddened to see a lot of comments posted of just random ignorant thoughts that have no basis from experience. To call this a convenience for the parents... obviously you have never experienced the "convenience" of caring for a child with severe/profound disabilities. If only life were that simple and easy when it came to decision making.

How can a parent express every little detail of what they have gone through or what they are thinking? Let’s give Ashley’s parents a break… Not everyone has to agree with or support the decision of Ashley’s parents, but let us not judge them either… As long as Ashley is happy and healthy… is that not the true ultimate goal in life, not just for Ashley, but for all?

Anonymous said...

Why isn't it "mutilation" when we carve up our kids backs to put rods or mini bridges to correct scoliosis or break jaws to correct the alignment in their bites or tubes for ears or artificial knee joints? Nobody ever died directly from scoliosis or back injury or misalined jaws or ear infection or weak knees. Sure, it's painful and life altering but nobody ever questions a parent about "barbaric" procedures to make corrections through surgery because this is what we expect from the medical profession.

Like Ashley's parents, I've been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. I can't imagine Elisabeth missing out on our annual backpacking adventures up the mountains when she reaches her maturation point in height or weight. I can't imagine her lying on the floor or in a wheelchair as an adult because she's too heavy to lift or transport into kyak or canoe or horse. I can't imagine her going through life without having the same opportunties of her siblings and peers. It would kill her to be restricted to a wheelchair or in supine position all her life.

I don't understand why everyone is against using medical breakthroughs for people if it will enhance their quality of life. As for using these same procedures so that parents can better assist their child, I don't see anything wrong here either. Go ahead and talk about what is "ethical" and what is "dignity" after wearing a diaper instead of using a toilet for one whole month relying on everyone else except yourself to change it. Go ahead and talk about what is "ethical" and what is "dignity" after tightly binding your body in a burlap bag having to rely on others to take care of you.

It's easy when they are young, but what about when our kids are 30? It's not like we're experimenting on our kids. People are blowing this "ethics" and "dignity" out of proportion and shoving their value systems and religion down our throats so much that they are actually interfering with progress. Most of the time, our kids are invisible to people. It is only when their disability becomes the focus that they are visible to others. And most times, what people see is what we dont' want them to see -- on object of pity.

Instead of people looking at our kid's emerging abilities, the focus is alway what they can't do which is often times used as the basis for planning their life instead of letting the parents and advocates having control. Develop a plan for kids based on what they can't do? This makes sense? Do we tell kids they can't play baseball because when they are 4 they can't hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability.

Here's my analogy. Let's say typical children are like apples growing on limbs from trees and our children are like carrots. The common need is light, nutrients, and water. The conflict arises for the carrot because the tree blocks out the light and zaps the water and nuturients. We wouldn't cut down the tree or let the carrots die from neglect, would we? But when the people who care for the apple trees try to tell the carrot growers what to do, this is wrong. We need to work together instead of working against each other.

Anonymous said...

p.s. And we wouldn't even be having this discussion if our our schools, and public and private places provided adequate facilities for our children and adults when they need to be changed or bathed in the instance of a young menstruating female. We wouldn't be here if their space was designed to meet their needs and not of their typical developing peers. We wouldn't be here if we went beyond ADA compliances by making buildings, sidewalks, parks accessible for all without ever having to rely on other people to carry our kids or adults or their wheelchairs. And we wouldn't be here if options for outting went beyond the "handicapped" routes or zones or areas that separates your child and mine.

Anonymous said...

issues have been around forever. When our society refuses to acknowledge the challenges our family and friends continue to face in areas of accessability, mobility, and education even in light of ADA, IDEA, FAPE, what other choices do we have?

Honestly, don't we really think this has less to do with Ashley and more about restrictions and barriers. Ashley nor her parents should be used for target practice just because there is a denial about issues of accessibility, mobility, education, and housing.

Thanks for listening ..

Anonymous said...

Interesting blog + comments!
Found the contributions of Pandora's box and Elizabeth's nother especially thought-provoking.
I don't have children, but I've worked as a carer in an institution for elderly people with neurodegenerative diseases, many were wheelchair or bed-ridden.
I hated tasks like diaper-changing etc. and I was also extremely shocked by the inadequate behaviour of some of the male carers. Ashley's parents were right to 'unsex' her. I guess some carers are OK, but from my experience, a lot of them are just dregs who couldn't find a better job, resent their professional failure, and take it out on the patients. People like me who needed the money but also applied to the job out of altruism are a minority, and they don't hold it for long, because of the male colleagues cracking sexual jokes all the time etc.
With adult patients, male carers are indispensable because of all the lifting and carrying involved. Myself I am very 'frail', couldn't ever lift anything heavier than 27 kilos, half my weight, and was eventually diagnosed with sciatica at 28, after years of NSAI and pain-killers. If I had a disabled child, now, I'd be unable to lift him when he grows heavier than 20 kilos. I think people who dismiss the weight issue as a detail should be forced to do physical jobs for a couple of years.
Also there's another aspect to the treatment: Ashley's disease couldn't be diagnosed before she was born. Other disorders can, and often you're given the possibility to abort. If Ashley's treatment becomes routine for severely retarded children, I guess I'd choose to keep a child with her kind of symptoms, though I'd prefer a healthy child, obviously.
Pandora's box was right to point out that some reactions about the removal of Ashley's breasts and her hysterectomy was purely fantasmatic. As a woman with heavy, painful periods, I'd hate to be lying in bed, in diapers, during a whole 5 days each month, and have the kind of carers I mentioned above change my diapers and clean me. I know Ashley's incapable of modesty, and she wouldn't notice inappropriate behaviour, but I think her dignity would still be sullied. A couple of weeks ago, it emerged that some carers in a French hospital had taken offensive photos of female patients while those were unconscious. The women knew nothing of it at the time, but it is nevertheless a breach of their dignity. It is in Ashley's better interest that her parents remain her carers.

Anonymous said...

i can understand about the decision the parent's did make. i'm mild mentally retarded my parent's had my testicles removed so i would not have any sexual urges becauase i had masturbated in public and masturbated 4-5 times a day. i accept what my parent's did was right.

anthony cuerden said...

As a parent of a child profoundly handicapped, I can completely understand the reasoning behind the decision that was made by Ashley's parents ... even with my child being a boy. My son, Greg had a bilateral femorectomy that caused him (and us) pain and stress for 18 months. His quality of life is much better today.
I sleep well at night knowing my son trusts me to do the right thing - something I think only parents with this common ground can understand.
I have learnt may things since my sons birth. One of the main things was not to judge other people and their actions. And two, never to believe the press!