Parents defend treatment to keep girl child-sized

[Player-X]

Parents defend treatment to keep girl child-sized


Parents of a nine-year-old U.S. girl with the mental ability of a three-month-old baby are defending their reasons for using medical treatments to keep their daughter child-sized for the rest of her life.
The severely disabled Seattle girl, named Ashley, suffers from a type of brain damage doctors call static encephalopathy that will not improve.
She cannot walk, talk, keep her head up, and is fed through a tube.
Her parents call her "Pillow Angel" because she stays wherever they place her, usually on a pillow.
Ashley -- who doctors expect to have a normal lifespan -- has had a hysterectomy, surgery to block breast growth and undergone hormone treatment that will limit her growth.
The process became public when Ashley's doctors published her case in a U.S. medical journal last year, provoking fevered debate on the ethics surrounding the treatment of disabled children.
Ashley's parents decided to go public with a blog, which was launched Jan. 1, explaining their choice.
"Ashley has not shown material progress in her mental ability since she was three months of age, she is dependent on us in every way (including position change in bed), she can't hold a toy, and we're not sure she even recognizes us," wrote her parents, Seattle residents who have chosen to stay anonymous.
But they say the youngster loves music and kicks and moves her arms when she likes a song.
Her favourite musician is Andrea Bocelli, her parents say.
Their daughter, who goes to a school for special needs children, is alert and aware of her environment, they wrote.
They have defended their decisions, saying that keeping their daughter small will make her bed-ridden existence more comfortable and it will make it easier for them to move her around.
"As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc) instead of lying down in her bed staring at TV (or the ceiling) all day long," they wrote.
Ashley's parents say they are currently near the limits of their ability to lift their daughter at her weight of 65 pounds.
"Therefore, an additional 50 pounds would make all the difference in our capacity to move her. Furthermore, other than her Mom and Dad the only additional caregivers entrusted to Ashley's care are her two Grandmothers, who find Ashley's weight even more difficult to manage. We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers," they wrote.
Keeping their daughter small will also prevent bedsores and infections, Ashley's parents say.
In their blog, which includes photographs of Ashley, her parents wrote that the treatment is not intended to convenience the caregiver.
"Rather, the central purpose of the treatment is to improve Ashley's quality of life," they wrote.
Three years ago, Ashley's parents made the highly unusual decision to keep their daughter child-sized when they observed early signs of puberty.
The procedures will keep Ashley always at about four feet, five inches, and 75 pounds making it easier for her to be moved.
Ashley's parents also opted for surgery to remove their daughter's uterus and breast buds in consultation with doctors at Seattle Children's Hospital in 2004.
"Ashley has no need for her uterus since she will not be bearing children," they say, adding that the decision means she will not experience menstrual cramps.
The decision to remove her breast buds was partly to avoid sexualizing Ashley in the eyes of her caregiver, but mainly so that she would not experience discomfort when lying down.
"If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity," they said.
"The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."
Ashley also underwent an appendectomy during her surgery, as she would not be able to communicate pain if she were to suffer from appendicitis, they said.
But reaction to the treatment on websites has included charges that the couple's behaviour was "despicable" and "Frankenstein-esque."
One reader wrote a note that said "Eugenics was my first thought" while another wrote "I find this offensive if not perverse."
Ashley's treatment had been described as "ill-advised" by Jeffrey Brosco, a pediatrician at the University of Miami.
However, he applauded doctors for publishing the case and helping to "advance our ethical dialogue" on the topic.
Ashley's parents said the objection that their daughter's treatment interferes with nature is a "ridiculous objection."
"Medicine is all about interfering with nature. Why not let cancer spread and nature takes its course. Why give antibiotics for infections? Even an act as basic as cutting hair or trimming nails is interfering with nature," they wrote.
Some may question how God might view this treatment, Ashley's parents said in a blog entry dated Jan. 3.
"The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains that He endowed them with) to maximize her quality of life," they wrote.

Considering the alternative I am with the parents on this one, most people who attack them doesn't think about the alternative to what the parents are doing in the long term.

[MiretanK]

I just know how that works and that's my point of view also. Soon she'll be reaching the adolescence and puberty. That'll be a chaos for the Pillow Angel. Hope her parents will win.

[Exodus]

Hmm... what's the point of going through all this crap?

[Boltzmann]

I'd say they've the right to do it. The child will not ever be able to make a decision regarding this (since the experts' opinion is that her condition will never improve), and it's not affecting her negatively in any way (as her mind is still that of a baby, a small body suits it better).

Those who oppose this are mostly arguing from the naturalistic fallacy...

[D.D.]

has this been done before? id like to see some material on this process.

[Coolsvilleman]

tough decision. In this extreme case I'd say it seems like the best option. I'm just afraid to the lesser cases down the road where this method should not be.

[darth sephiroth]

The only problem i see in this is what Coolsvilleman said, that if the parents win a lot of idiots will think they can do that too. Perhaps someone will figure they like their child as she is at the age of 8-12 (not reached puberty yet, but isn't completely inept) and doesn't want all the trouble of raising a teenager, and then people who hate having to let go of their children when they grow up...

anyway, those parents will hopefull win and parents thinking the latter will hopefull be shot (in a metaphoric sense)

[Player-X]

I think that if the court is with them on this one as they have a few doctors approval and it will still be unlikely they will set a precedent for childcare as they have a few doctors approval while people being idiots and doing the same thing they did wouldn't.

This might be unrelated but personally I think the child is truly blessed by not having the mental capacity to even understand concept of suffering or worry and all she does is just lie in bed and never have to worry about anything.

Anyone saying such treatments is an "insult to human dignity" is applying themselves onto someone who is a different person, dignity only applies to those who can feel dignity and is a relative concept between people and besides I think a three month old mind do not have a sense of "dignity".

Arguing about it as being "unnatural" is even worst, those people eat cooked meat from farm animals, live in artificial constructs and to some degree use the fields medicine which already can be defined as "unnatural".

[Boltzmann]

Originally Posted by darth sephiroth

The only problem i see in this is what Coolsvilleman said, that if the parents win a lot of idiots will think they can do that too. Perhaps someone will figure they like their child as she is at the age of 8-12 (not reached puberty yet, but isn't completely inept) and doesn't want all the trouble of raising a teenager, and then people who hate having to let go of their children when they grow up...

But a normal child would be affected negatively by these choices, since their brains will have a normal development. In that case, they'd suffer greatly because of their condition, and just this fact is enough to make the whole procedure unnaceptable (for normal IQ kids, with normal brain development).

[darth sephiroth]

which is the main reason that would be a bad thing Boltz

[D.D.]

again, i ask : hasn't somebody undergone this process before? are there photographs of the end result? i believe before further discussion, we need to have some sort of idea what the final product looks like and whether its convincing or not. i propose we need to know more about this process so we can think of the below:

1. also what happens when said subject is 40+ and the illusion (i think) will wear off?
2. what happens when her parents are gone? how likely is her quality of life to be maintained?
3. wat are the long term implicatinos 20, 30 years down the road? has significant research been done?

[Player-X]

D.D I haven't heard of this being done until now so I assume this is the first time it has been done, it would be interesting to watch how things progress but personally I think she will probably eventually end up as some kind of curiosity to amuse other people after her parents are gone.

[Silenus]

That's a sad thing.
And a though decision for parents.

[Coolsvilleman]

Originally Posted by Boltzmann

But a normal child would be affected negatively by these choices, since their brains will have a normal development. In that case, they'd suffer greatly because of their condition, and just this fact is enough to make the whole procedure unnaceptable (for normal IQ kids, with normal brain development).

Ya but what is normal? What about people slightly under normal. And how can you accurately measure normality. That's where I see a problem. Unfortunately alot of people (especially parents) cannot see or dont want to deal with their child in the future and I'm just afraid of this becoming widespread.

Also considering they are basically stopping growth( right???) wont that give her a really long lifespan since her body wont decay... or maybe I just don't understand how this process will work long-term.

[D.D.]

Originally Posted by Coolsvilleman

Also considering they are basically stopping growth( right???) wont that give her a really long lifespan since her body wont decay... or maybe I just don't understand how this process will work long-term.

likely not. they're stopping some features of growth, but aging should not be affected (for better or for worse). tho i cannot say for certain (for reasons i listed in my last post), i suspect that she'll become like the people infliced with genetic early aging.

that said, if none of us have anything technical on this issue and are just talking from our hearts, then forgive me for being serious (for once??!?). i apologize for intruding on this "shooting of the sh!t".

[darth sephiroth]

Originally Posted by Coolsvilleman

Also considering they are basically stopping growth( right???) wont that give her a really long lifespan since her body wont decay... or maybe I just don't understand how this process will work long-term.

aging comes in three ways:
1. the first 18 years of development
2. gravity's pull on your skin
3. indisposable toxins building up in the cells (this is why you die of old age)

this only kills number 1. Number 2 and 3 will not be killed. they cannot be killed in any other manner than skin-smoothing pharmasuitables which just cover them up.

[Player-X]

Telomeres getting shorter as cells divide is another factor in aging as well as free radicals attacking the body.

[darth sephiroth]

Telomere - Wikipedia, the free encyclopedia
Radical (chemistry) - Wikipedia, the free encyclopedia
for those who have no idea what PX just said!

[Boltzmann]

Originally Posted by darth sephiroth

which is the main reason that would be a bad thing Boltz

Only for normal children, mind you

Originally Posted by Coolsvilleman

Ya but what is normal?

Our psychometrics are bad, but not that bad. Even an untrained person can spot a total retard (I define a total retard as someone who acts like a 1 year-old, regardless of chronological age), right?

Originally Posted by Coolsvilleman

What about people slightly under normal.

People slightly under normal can understand suffering just fine - they can even express their discontentment. That's good enough.

Originally Posted by Coolsvilleman

And how can you accurately measure normality.

It's not that hard, neurologically spreaking. Just look for the usual suspects in aberrant brain topography.

And you don't have to measure it "accurately". You just have to detect the extreme cases (like the child subject of this thread). You can't honestly believe that it's hard to do it.

Originally Posted by Coolsvilleman

That's where I see a problem. Unfortunately alot of people (especially parents) cannot see or dont want to deal with their child in the future and I'm just afraid of this becoming widespread.

It's not hard to deal with. Parents will need a joint team of doctors' approval before getting such stuff done. As I've said, they only have to identify the extreme cases.

Originally Posted by Player-X

Telomeres getting shorter as cells divide is another factor in aging as well as free radicals attacking the body.

Yep, the Hayflick limit.

BTW, don't forget about antagonistic pleiotropy when talking about theories of ageing.