This information was brought to my attention today. Since it concerns my field of employment, I read it with great care and curiosity. For those of you who ponder issues related to developmental disabilities, I'd be interested in your thoughts and feelings about what the parents and medical professionals are doing. The story can be found at:
http://ashleytreatment.spaces.live.com/blog

Thank you for sharing this story. I will share this with others that I work with (much more informed about issues of developmental disabilities than I am). All I can say is that the parents sound like they did what they felt was in the best interest of Ashley and I commend them for the care and love they are giving to her.

Thes types of parents are gonna be commended and critisised every twenty seconds. Sometimes it's hard enough being a parent without half the world commenting on your jundment call of their treatment. Tough especilly tough for thse parents.

.....i don't think your asking anyone for their judgment on the parents but more on theis type of treatment and the fact that other parents are requesting it?

Isen't their some type or part to the hypocratiic othe (arggg spelling) that no doctor shall do their pationts harm...so logically the procedure would of had to have been passed by ethic commities and i bet they were especilly stringent considerring they would of know so much attension would of been on them and theyd be setting some type of presedent.

This story new to me and i think im thnking aloud more than anything.

My sis got 3 kids 2 of them afected by a syndrom 1 mildly the other severly, In my last relashionship the child out of that had the same condision so i know something of what she feeling and dealing with it's a tricky time for her as some things that gonna be lifelong just hitting her.

but back refocused i still gotta think and find out more bout this child .....i am truly hung and going ah but, but then again....so i can't formulate anything this uninformed even then i wonder how or what right i really have to an oppinion as yet i'v no experience of the parent's life or the kids quality of life as it would of been or will now be even if it gonna effect a lot of world change in treatment, Dose your oppinion effect your job performance.....you didn't say at what level or form of employment you do apart from it being your general area of work...

hope your feeling weller after your opp

celtic_flame

good

There are too many questions left unanswered by Ashley's story. It raises issues where medical interventions and decisions were made on what seems to have been based on intuitive assumptions and her carers but very little towards treatment of the disability itself. Treatment has been ongoing in the past three(?) years so, one would question the motive for publicity now. The article seeks to justify the decisions and actions taken. It only brought forward examples of consent but not real arguments against such medical interventions which may have been brought forward by parents of children with shared circumstances or even contrary medical opinions.

I saw this story on a show the other night. I think it's sad that people are doubting what the parents have done. What parent wouldn't have the best interest of their child at heart?

In my employment, I work as a cook in a house where 12 profoundly developmentally delayed and differently abled adults live. When I am not cooking lunch and dinner, I am working as a direct support staff person which means I provide whatever level of assistance a person needs to eat and drink, communicate, move from place to place, go to the bathroom, do personal hygiene, dress themselves, travel to the stores, library, church, movies....whatever. The age range within their home is early 40's to 70. The mental capacity ranges from about 2 years old to probably 6 years old. Everyone demonstrates a sense of humor and the ability to be angry or sad. It is very difficult for anyone of them to independently express that he or she is feeling sick or to tell what part of his or her body might hurt.
When I read about Ashley's Treatment, the most troubling message I kept hearing was that the medical changes made to her body were for her future comfort but that sort of conscious engineering seems done for the caregiver despite their constant message to the contrary. Every parent wants their child to be spared pain. I worry that caregiving will be seen as more important than the individual who needs the care. I've work with a woman who had her eyes removed because she had ongoing cases of pink-eye. It was more efficient to remove her eyes because she was already blind than to more agressively figure out why she kept getting pink-eye. Who's well-being was managed in that situation?

Hi, Whittle: I have tried to research various journals on this case since coming across your post but have not been able come up with any form of formal challenges against it, in both the medical or legal environments, yet. However, I have no doubts whatsoever that the professional bodies within those professions will take to scrutinise this situation soon enough. Much debate has already arisen from it. It seems to be that the procedures were done in secret and had only come about when the Drs tendered an article on this matter.

While my sympathy rests with the parents who face the enormous task of caring for a disabled child, the inescapable fact is that the medical intervention remains to be seen as mutilation where none of the procedures could qualify as therapeutic as none were intended as treatment for damaged or diseased organs or processes. Many would argue that this is the basis upon which medical ethics operate. I share your concern because what I fear most from the Ashley story is the precedence it creates as an alternative for other carers responsible for the welfare of vulnerable individuals. Both within family or institutional situations. In my opinion, the responsibility in this case rested firmly with the doctors rather than with the parents who, faced with heartbreaking decisions, relied upon these doctors and were perhaps coerced into making decisions under duress of care for their daughter. A very difficult and sad story Ashley's has become.

I know in psychology any experiementasion or reserch has to go throw a ethic commitee panel...so i assumed it's also the case in surgery or medical procedures, it's shocking its not been dun?

As you were saying whittle many of the people you care for don't or can't say what hurts or what alments they have. So how can anyone know over and above subjectivly what that particuler person is experiencing. Who has the responcibility of care and to care on behalf of that indivduel, parents? doctors? Public oppinion? What may or may not be in the best intrests for that person.....What if the best intrests of that person debends on the carrers ability to cope with them whats the "right" thing to do then?.....Any situasion that balances the interdependent needs of two or more interlinked people comes into question is always at risk from abuse. It is scarry and worrieing So is their or will their be a goerning overseeing body? ..What were the parents concernes i wasen't to clear on it they were arguing that they were errrr de-sexing their child hence the spacifice procedures. Was their a risk of sexule abouse?Allthough nun of the organs were disased dose this put a diffrent slant on the procedures carried out?

I could't find but is their prier reserch conducted seprite from this case that points out a ratio to weight hight and physical comphort.

it's great you brought this too everyone's attension and your sharring of your own work and the reality of what it's like for you in your experince of the system and also the experience of the people you work with from within that system.

celtic-flame

One of the greatest problems is that ethical decisions made in ONE case can then be used to set legal precedent in OTHER cases. From what I've read and heard, there was a lot of concern and discussion before these steps were taken for this girl. I can understand why the parents did it, and it does SEEM as though - in this case - it may actually be beneficial for the child, emotionally if in no other way.

What's of concern, though, is now that the case is out in the open, what happens if other parents want to do the same thing and maybe NOT always appropriately? Inevitably, some cases will come to light where it's a real borderline issue, where the child's inability to ever - for example - stand on their own, or feed themselves - is less clear.

For me, the area of concern is not so much THIS case, but where it could lead.

Dejavu, my concern is also for where this individual case can lead. It is my belief that caregiving is about the individual who needs specific care, not making caregiving easier for the caregiver by eliminating issues that might make caregiving more difficult.