Small body, small mind
Posted
January 3, 2007 at
10:56 pm by
Jessica
In a bizarre tale of loving parents who are seemingly stretching the boundaries of ethics to keep their disabled daughter small through a series of surgeries and hormonal therapy; captures the innocence of a 9 year old, brain damaged girl, both mentally and physically. She will live out the rest of her days with her current small body, through stunted growth procedures and drugs. Her parents will never have to wonder if she can just stay little forever, doctors are intervening to make sure she will.
As much as my first reaction was disgust and shock, after the following article from The Guardian Unlimited, I am left wondering — how many parents love as much as these parents love? Perhaps we should all be so lucky to have parents that are realistic in their expectations and choose a highly controversial and emotional road instead of an easy one. Who am I to judge as I do not have my own “Pillow-Angel”. Perhaps, somewhere between what they think is best for Ashley, and their desire to never let go of her infant-like qualities, they are setting the stage for a healthy relationship which supports and facilitates the desire to constantly meet the needs of the high demands of a baby turned brain damaged child.
They claim it is all for Ashley’s sake, and perhaps it is:
The cause of the controversy is the “Ashley Treatment” - a course of surgery and hormone supplements devised for her at her parents’ request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size.
Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at 4ft 5in (1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.
This week Ashley’s parents, who have chosen to remain anonymous and have only let it be known that they are “college-educated professionals” living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth. It is the first time they have given a public account of their actions. The explanation is accompanied by a gallery of photographs showing Ashley over the years, from her as a smiling baby a few months old, through to today when she is seen nestled in a sheepskin rug.
She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmental level since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life. Read the rest…
From The Guardian, Picture of Ashley age 9Read Ashley’s parents Blog and see pictures of Ashley from birth until now…
Tags: Ashley-Treatment, Ashleys-parents-blog, disabilies, Health, medical-intervention, static-encephalopathy-of-unknown-etiology |
25 Responses to “Small body, small mind”
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1. roGER
January 4, 2007 @ 11:07 am
At the risk of sounding callous, I found this whole situation completely insane.
The Pillow Angel is a Pillow Cabbage, and should be painlessly killed.
The doctors and medical staff who performed all that surgery and wasted all those medical resources should have operated on someone worth saving. Two loving parents should have a child worthy of their love.
2. Cristina
January 4, 2007 @ 11:40 am
I am shocked and, frankly, disgusted by roGER’s comment above. Why is this daughter not worthy of love? Just because she is disabled?
My feeling is that these people are doing what they need to do to care for their daughter. I cannot judge them, as I have never walked in their shoes.
3. Angela Bird
January 4, 2007 @ 2:08 pm
Hey, Roger, don’t you have you have something better to do?…Like find a little kid in a wheelchair and kick him?
Having said that however, I think these parents are sick human beings. It’s obviously for them and not their daughter. Their daughter doesn’t care about how heavy she is or whether she develops or not.
4. Lorraine
January 4, 2007 @ 5:06 pm
Has anyone considered what this operation will do to the child’s bone-calcification? If she is not to disintegrate painfully from severe osteoporosis, she must stay on HRT for life, with possible further health problems. In addition, this is futher proof of the desire of authorities to force all disabled into submissive, infantile responses in order to ease the care-givers role, both physical and psychological. We are slipping towards manipulation of humans to make them facile utilities for whoever at the moment has the biggest stone-axe. Has anyone noticed that NZ is BRAGGING of having developed an irreversible, bio-physic brain-’chip’?
5. Capttan Kona
January 5, 2007 @ 4:58 pm
Natural selection. This child should have been allowed to die with dignity. Instead, she will be forced to live as her parents see fit. All because they do not love her enough to let her go.
In case you wonder, I spent more then eight years of my life watching my father, who was diagnosed with Alzheimers at the age of 53. It took ten years for him to pass, but I had a do not resuscitate order in place, just in case.
Sometimes, and this is one of those cases, where you show more love and compassion by letting go and letting nature take its course. These parents are confused by the morals of our society and their own desire to do what is right. Unfortunately, the picked the wrong course of action.
6. Papa Spot
January 5, 2007 @ 5:49 pm
It’s easy to sit in judgement on cases like this but I think it’s important to remember that forty members of the ethics committee *who had access to ALL the facts* voted to allow this. The vast majority of us have formed our opinions based on the fraction of information provided by the media.
7. Capttan Kona
January 5, 2007 @ 6:28 pm
Like I said, I sat and watched my father in the mid years of his life begin suffering a ten year ordeal. So Papa Spot, even in view of a flawed decision to get income for a hospital through what is a very expensive treatment, I do have a valid point of view.
The committee was wrong. The parents are wrong. And the “Pillow Angel” will have her life extended un-naturally, beyond the survial point of her parents perhaps, and she will be left to the system.
University of Pennsylvania ethicist Art Caplan is correct in his assertions about how troubling this case is. It will not be much longer before we are seeing similar treatments for children with behavioral problems, condeming them to a life time of permanent childhood.
8. Papa Spot
January 5, 2007 @ 7:06 pm
Your view about *your* case is valid, Capttan Kona. But unless you happen to know all the facts of THIS case, your view is no more or less valid than anyone else’s about it. You can’t simply take a few things that happen to be similar and say that the cases are the same. Decisions like this should be made by the families of the people involved within the confines set by the institutions that are set up to guide the medical professionals *involved* in the case. Unless you happen to be one of the people directly involved in this case, you have no more information about it than the rest of us have. Yes, your view is valid. So is mine. So is everyone else’s that has carefully considered this.
9. Papa Spot
January 5, 2007 @ 7:10 pm
[quote comment="56153"]University of Pennsylvania ethicist Art Caplan is correct in his assertions about how troubling this case is. It will not be much longer before we are seeing similar treatments for children with behavioral problems, condeming them to a life time of permanent childhood.[/quote]
I remember when they first started allowing families to make the decision to disconnect clinically dead relatives from life support systems. Some people said that it was just a matter of time before we started euthanizing people just because they were seriously ill. Didn’t happen.
10. STL Mom
January 5, 2007 @ 8:04 pm
I can see why the parents made this decision, and it may even be the best choice for them and their daughter. A “child” they can care for at home is almost certainly going to get better care than a woman in an institution. But it gives me chills, all the same, because it reminds me of forced sterilizations, lobotomies, and other horrors of medical history.
By the way, how exactly do you let your child die with dignity? If she’s not on life support, you’d have to let her starve to death or choke or let her bedsores get infected until she burned up with a fever. None of these sound pleasant. We certainly wouldn’t let anyone treat an actual 3-month-old that way, so why a person functioning as a 3-month-old? I think a nation that spends billions a year on our pets can afford to support families in these tragic situations.
11. Capttan Kona
January 5, 2007 @ 8:04 pm
Does the name Doctor Kavorkian ring a bell? Or how about the right to die? Or all of the couples who are killing themselves in suicides even though only one person is ill? I am afraid you are confused.
There is no real compassion in forcing a person to live a life that is not a life. That is what is occurring here.
12. ellie
January 5, 2007 @ 8:15 pm
Having witness first hand a family member who can no longer pick up and carry or easily dress a 20 year old who suffers from serious brain damage from birth, I can understand why Ashley’s parent made this decision. I see the pain in my the mom’s eyes every time she realizes that she cannot physical handle and hold a 20 year old. Ashley has a true chance to be held for so much longer. While the medical implications may present unwanted side effects, I understand the parents decision to hold her as long as possible.
Ellie
13. Greg
January 5, 2007 @ 9:14 pm
My comment…. we should all mind our own business. It’s their family, they should decide what to do. End of story!
14. Robyn
January 5, 2007 @ 9:23 pm
[quote comment="56181"]My comment…. we should all mind our own business. It’s their family, they should decide what to do. End of story![/quote]
It’s all of our business if this sets a legal and moral precedence. Some people believe that this sets the rights of the disabled back 100 years.
15. Dr. Sigmund
January 6, 2007 @ 12:13 am
Wondering if this whole affair with the “Pillow Angel” will morph into another media spectacle like the Terri Schiavo thingie? That should be good to see! Then of course you can expect a great episode of SouthPark to follow up for good measure. (grin)
16. Jessica
January 6, 2007 @ 11:18 am
All I have to say is — when you think about cleaning up somebody’s poo and wiping their ass — in order of preference…would you rather do that with an infant, a 9 year old or a 30 year old adult?
(Yep, thought so.)
17. Cristina
January 6, 2007 @ 11:31 pm
Jessica - exactly! Well-put.
18. Papa Spot
January 7, 2007 @ 10:40 am
[quote comment="56181"]My comment…. we should all mind our own business. It’s their family, they should decide what to do. End of story![/quote]
Bully! I absolutely agree. I really hope that (as one poster accurately suggested) this doesn’t turn into a media frenzy or a political shuttlecock but in the end, it’s a family matter.
Whether one agrees with the decision or not, I hope we can all agree that this must have been a terribly hard decision for the parents to make.
19. Papa Spot
January 7, 2007 @ 11:03 am
[quote comment="56182"][quote comment="56181"]My comment…. we should all mind our own business. It’s their family, they should decide what to do. End of story![/quote]
It’s all of our business if this sets a legal and moral precedence. Some people believe that this sets the rights of the disabled back 100 years.[/quote]
I see your point but I don’t think you can treat this as a “rights of the disabled” case in the normal sense. This child is an infant and the decisions that a disabled adult would make must be made by the child’s parents. So, while I concede that this *can* be viewed as a rights-of-the-disabled case, it’s also a parental rights case.
20. Alina Poulain
January 8, 2007 @ 4:22 am
The problem with our society is that we do not care any more about what it is happening to other human beings, we’re very busy in our own problems and THIS is a very important thing to THINK ABOUT. We all have valid opinions for this, even if some do not have experience with disabled people.
I have a 20 year old sister who’s mental retarded. At the age of 1 the doctors said that she would never had any advance, such ash Ashley’s doctors said, but my sister DO walk now, with help, but She DOES!!! a¡After a long time of therapy and love; of course we felt the fear of see her falling or getting ill and when this things happened we were at her side to take care of her, no matters the time or the effort, it was a hard situation but we’re all together to get thru this.
Ashley is not a KFC chikin’ which you can customize. She a human, she’s not a toy because in this page http://ashleytreatment.spaces.live.com/blog they explain the process as a TV infomercial cause all the benefits sounds so marvelous but we don’t see what’s behind: the comfort of the family, the aceptance of the society because she will always be accepted as a mental retarded baby. They say that is very hard to manage a grown-up girl, but there’s no reason you can hug her ans share your life with her, a lot of people around the world had done it, there’s more life than parties and family trips. Can’t you see?, we are trying to minimize this problem with surgeries that affects human dignity!!!!! Ashley’s happiness is not in her size or weight, it’s in the love of her parents, and what they’re doing is not love, is selfishness.
This is horrible, this is a crime. According to the Convention on the Rights of the Child of UNICEF “Children have the right to be treated with dignity” and “Children have the right to protection from neglect” so where’s the doubt?
Here in Mexico, where I live, a lot of disabled people have a life, there’re activities for people like Ashley, and there’s nothing to fear about nature’s curse. Faith and Love can do more than medicine and a lot of disabled people can testify that.
I understand parent’s fears but I do not justify the way they’re trying to solve the problems that may come, like, they took her apendix out with a 5% of probability of an illness to happen, because they argued that if she would have pain she wouldn’t be able to express it, but in the other hand, she can fell music and give reactions to it, my question is, Are the parents going very far with this preventing system?
Well I prey for this angel, I will do what I can to express my hate to this selfish actions to innocent disabled persons.
Alina Poulain W.
Mexico City, Mexico.
Artist
PS: In Ethics things are clear and simple, I do read all the informations about the case and I think that I don’t need the 100% of the information to make a judgement. Dignity is dignity here and everywhere for all humans.
21. Papa Spot
January 8, 2007 @ 4:47 pm
[quote comment="56677"]The problem with our society is that we do not care any more about what it is happening to other human beings, we’re very busy in our own problems and THIS is a very important thing to THINK ABOUT. We all have valid opinions for this, even if some do not have experience with disabled people.[/quote]
Until you’ve walked in the parent’s shoes, I think it’s pretty unfair to imply that they don’t care what is happening to their daughter. I seriously doubt if this was a decision that they took lightly. If you’re talking about society not caring about what happens to other human beings, if society didn’t care, we wouldn’t even be having this discussion.
[quote]
PS: In Ethics things are clear and simple, I do read all the informations about the case and I think that I don’t need the 100% of the information to make a judgement.[/quote]
Things are clear and simple in ethics? You’re joking, right?
[quote]
Dignity is dignity here and everywhere for all humans.[/quote]
Again, it isn’t that simple. Dignity is one thing to you. It may be another thing to me or the child’s parents. I’m willing to bet that the parents would argue that what they’re doing IS the most dignified thing for their child.
22. Capttan Kona
January 8, 2007 @ 5:20 pm
[quote comment="56294"]All I have to say is — when you think about cleaning up somebody’s poo and wiping their ass — in order of preference…would you rather do that with an infant, a 9 year old or a 30 year old adult?
(Yep, thought so.)[/quote]
What I would rather do does not enter into my decision. Ashely has no life, none. Read her blog, the parents do not even know if she recognizes them. She is tube fed. She will live and die in a bed. She will never see the world, have her first kiss or fall in love with anyone. Why? Because she can’t. She has no life at all. Why would you condem someone to such an existence? I would never, ever want to live such a life. So I would never, ever impose such a life on anyone.
23. Papa Spot
January 8, 2007 @ 7:53 pm
Jessica, I think you drove a nail right into the complexity of this thing. Ethics today are NOT “clear and simple.” Maybe things were clear and simple in the cowboy days when a person either lived or died and there was damn little that could be done in terms of human intervention but that just isn’t the case today. Today, we can keep a body “alive” for decades after the brain is dead and gone. Our technological evolution has so far outpaced our social and spiritual evolution that we are nowhere NEAR being ready to answer the questions that we have created.
24. AJ
March 12, 2008 @ 11:13 pm
I struggle with this issue, as I am not sure that it is medically ethical. However, I believe that these parents acted with love and out of desperation to be able to provide for their daughter. While some are posting that she has no quality of life and that she should be left to die, do you propose to pull her feeding tube such as in the Terry Schiavo case? That would leave her to die of starvation and dehydration. Which is more cruel? These are parents who love their daughter and want what is best for her, had they not made a public statement about this decision, we would have never known about it. I think that those parents who do decide to follow this course of treatment will in the future, keep their choice private.
25. Amandamic21
September 2, 2009 @ 12:23 am
Until you are in the position of her parents personally, how can you even have an opinion about this. Deal with the same situation, then you can offer an opinion.