Just another parental choice? <shocked> 1/4/07

[pdx.mothernurture]

Until New Year’s Day, not even her first name was known. Ashley was a faceless case study, cited in a paper by two doctors at Seattle Children’s Hospital as they outlined a treatment so radical that it brought with it allegations of “eugenics”, of creating a 21st-century Frankenstein’s monster, of maiming a child for the sake of convenience.

The reason for the controversy is this: three years ago, when Ashley began to display early signs of puberty, her parents instructed doctors to remove her uterus, appendix and still-forming breasts, then treat her with high doses of oestrogen to stunt her growth.

In other words, Ashley was sterilised and frozen in time, for ever to remain a child. She was only 6.

...

By remaining a child, they say, Ashley will have a better chance of avoiding everything from bed sores to pneumonia — and the removal of her uterus means that she will never have a menstrual cycle or risk developing uterine cancer.

Because Ashley was expected to have a large chest size, her parents say that removing her breast buds, including the milk glands (while keeping the nipples intact), will save her further discomfort while avoiding fibrocystic growth and breast cancer.

They also feared that large breasts could put Ashley at risk of sexual assault.

...

Ashley’s father went on to describe how her height is now expected to remain at about 4ft 5in (1.3m), and her weight at 75lb (34kg). Without the treatment, she would have grown into a woman of average height and weight, probably about 5ft 6in and 125lb, with a normal lifespan.

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Thoughts???

Jen

[sandals]

She has Encephalopathy. I have read a few versions of this story and considering that her cognitive abilities are that of a 3 month old and will never improve, I am not sure I fault the parents. Being smaller will allow them to move her and she will be less prone to bed sores. Lots of other reasons as well. BUt then I see why the outrage as well. I am not sure on this one I guess.

Just wanted to add that I dont necessarily agree with the taking away of her sexual parts based on not wanting to be sexually assaulted. but I also do not claim to know the realities of the kinds of assault that bed ridden patients experience.

[Quirky]

Holy mackerel.

[sandals]

A lot of the things i think about when reading this story conflict with the UA I think. I think theres A LOT more going on here than just parental choice or convenience.

[pdx.mothernurture]

Reading the article gave me the impression that they wanted to keep Ashley, for lack of a better term, portable...because she'd be easier to care for and take places, thus-they argued-improving her quality of life.

The whole thing disturbs be on many levels, and I continued to contemplate the case while I showered and pondered what alterations these parents might request next...

Dear Doctor,

Because of the relationship between the front door and our driveway, it's easier to load Ashley into the car from the left, which seats her behind the driver's seat. My husband, who does most of the driving <insert reason here> is quite tall and must scoot his seat back in order to have sufficient leg room to drive comfortably...particularly for long-distance drives, like taking Ashley to visit relatives or to the coast or other fun, exciting outings. He worries having his seat back so far may cause Ashley's legs unnecessary discomfort. Since she will never walk, and they just tend to get in the way and contribute to her body weight (a strain and inconvenience for her care providers) we'd like to have them both amputated---for her own good and quality of life, of course.

Also, while she's under general anesthesia we thought you might also take the opportunity to disable her vocal cords; Ashley just makes random noises anyway and can hardly communicate verbally. We've been told she will never be able to speak, articulating with words. Ashley adores the theater and other activities where silence is a virtrue but often becomes loud and disruptive, which is embarassing and decreases the frequency of these outings she so enjoys. As her parents, we think it will further improve her quailty of life-and ease of care-if she's made quieter.

Truly, where does something like this END?

If such actions are the right of a parent/guardian of a disabled child...why not for a healthy-but-too-young-to-argue-or-defend-themselves child as well?

Many parents circumcise because it's "easier to keep clean"---not so much for their son's during adulthood, but for the very brief time they'll be providing genital care during infancy/early childhood.

Jen

[pdx.mothernurture]

Originally Posted by sandals

Just wanted to add that I dont necessarily agree with the taking away of her sexual parts based on not wanting to be sexually assaulted. but I also do not claim to know the realities of the kinds of assault that bed ridden patients experience.

Removing her uterus won't prevent sexual assualt; she'll still have a vagina, anus, mouth, etc. In that sense, I think sterilization gives a false sense of security and sadly one of the few signs such abuse is going on is the discovery of a pregnancy. Sterilization may increase the liklihood the abuse would go on unnoticed, uninvestigated, and ultimately unpunished.

Really though it doesn't sound like sterility was the primary goal; portability for ease of care and transportation, was...which, IMO, is primarily a benefit/convenience to the care providers rather than the patient which is what makes it ethically repugnant.

Jen

[OnTheBrink]

Wow. I've never heard of anything like that. I guess I "understand", but I think it's wrong. All of that surgery must have caused a great deal of pain for a young person who cannot speak up about her own comfort. Is this a common response to this disease?

[MCatLvrMom2A&X]

I could say many things and all of them would be a UA violation so this sums it up for me in nutshell :Puke

[Quirky]

Jen, have you read the parents' blog and the comments that they clipped from a debate board? Having read through the whole thing, I have to say I understand where they are coming from, and I think you are being unfair.

This is about far more than convenience in terms of where the driver's seat fits. If my dd were to be permanently brain damaged tomorrow with no hope of recovery, I very well might make the same choices these parents have so that I could continue to care for her. Can you imagine trying to take care of a 150 pound, 5 foot 6 adult woman with the brain of a 3 month old? I sure can't. I very well might take measures to restrict her growth so that I could continue to care for my baby myself rather than have to put her in a state institution.

Read this. The whole thing. http://ashleytreatment.spaces.live.com/blog/

Truly, it is eye-opening and I don't think these parents deserve the criticism.

This is nothing like circumcision. It's not even in the same universe.

[OnTheBrink]

Originally Posted by Quirky

Can you imagine trying to take care of a 150 pound, 5 foot 6 adult woman with the brain of a 3 month old?

No, I can't imagine it. But many many people do it every day. I know that doesn't make it easier, but still. What about the adults who suffer brain damage and are forever "a vegetable"? Should their caretakers (spouse, parents, children, anyone) have their legs and arms removed just to lighten the load? It just seems bizarre to me!

And, it does seem a lot like circumcision. Is there something I'm missing here? Is it for the child's health? Or it is for the convenience of the parents?

[Quirky]

Again, read the blog and the comments. Read especially the comments of those who have or had brain-damaged children, and how incredibly difficult it has been for them to continue to keep those children clean and cared-for. Yes, people have coped, but many others haven't been able to and had to give up their children because they couldn't physically deal with them any more.

It's very easy to judge, but these parents put far more thought and consideration into this than parents do into circumcision. This situation is about what's in their daughter's best interests (being cared for at home by her parents), I'm convinced of it.

[dynamohumm6]

Originally Posted by sandals

A lot of the things i think about when reading this story conflict with the UA I think. I think theres A LOT more going on here than just parental choice or convenience.

yeah, that.

[OnTheBrink]

I did read the blog and comments. I'm still not convinced.

[pdx.mothernurture]

Originally Posted by OnTheBrink

No, I can't imagine it. But many many people do it every day. I know that doesn't make it easier, but still. What about the adults who suffer brain damage and are forever "a vegetable"? Should their caretakers (spouse, parents, children, anyone) have their legs and arms removed just to lighten the load? It just seems bizarre to me!

And, it does seem a lot like circumcision. Is there something I'm missing here? Is it for the child's health? Or it is for the convenience of the parents?

That's the way I'm looking at the situation, too...improve her quality of life by making her portable and care/transportation more convenient for the parents. I think this concept could indeed be applied to any other disabled child or adult needing near-total lifetime care and I find that scary and disturbing as heck. Stunt growth, remove parts you don't think they want or use or need to 'lighten the load' as a parent/guardian/caregiver rather than a medical indication where the treatments/surgeries first and foremost benefit the patient's health.

I am not trying to minimize what it's like to care for a extremely disabled, full-size, sexually mature adult; I spent years working in long-term care and hospice. It is possible, there is technology and resources available to assist without fundamentally and intimately changing one of the only parts of this person that's healthy and functioning normally.

Jen

[KsMum]

Wow, I fully support the parents.

[QueenOfThePride]

Originally Posted by OnTheBrink

And, it does seem a lot like circumcision. Is there something I'm missing here? Is it for the child's health? Or it is for the convenience of the parents?

The massive doses of hormones that will stunt her growth put her at a much higher risk of 'female' cancers.

This is nothing like circumcision. I fully support the parents.

[oliversmum2000]

Originally Posted by KsMum

Wow, I fully support the parents.

:

[pdx.mothernurture]

It's an extreme situation, both considering Ashley's condition and the treatments/surgeries...but there were no medical indications for stunting her growth, which was the primary goal---that was comfort/convience oriented for the careproviders, which is where I take ethical issue with it.

And, for the record I *am* a significant portion of the way through the blog/explaination and I really don't feel any differently at my core. It's a difficult situation and an enormous responsibility and I can understand them wanting to make lifetime care easier on themselves, I just disagree that subjecting her to hormones and surgery that she didn't need was appropriate.

Others are free to disagree; I really do 'get' both sides of this.

Jen

[stacyann21]

Removing several of their daughter's functioning body parts for their own convenience? Atrocious :Puke

[Amber Lion]

I read most of that first page on the blog.

I can't imagine having to make decisions like these in the care of a child who cannot make a position change or hold a toy, who gets seriously distressed if a stray hair falls across her face, etc., and who has NO predicted change in her condition. I think this family has obviously spent a lot of time and effort into trying to come up with the best way to care for their child - and are NOT looking overall for convenience for them.

I do not think this is like circ at all - or anything else you are comparing it to (i.e. removal of limbs: ). I don't think we should be critizising these parents who are doing the best they can for their daughter.