You can now have your child-sized!!!

[Khayr]

 

Parents defend treatment to keep girl child-sized

Updated Thu. Jan. 4 2007 12:46 PM ET

 

CTV.ca News Staff

 

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.

 

Source

 

Is this cruelilty, selfishness or compassion or selfishness in the guise of compassion?

[Naden]

^ What do you think, Khayr?

 

The decision, like the prospect of an infant who will never grow, is no doubt a torture for the parents. It is uncommon but maybe a lesser of two evils for this family. Many disabled women are raped in care facilities which is where adults are eventually housed when elderly parents cannot care for them. It will eliminate any discomfort during menses and fear of pregnancy. It is probably also geared towards inevitable weight gain and to minimize immobility risks.

 

There are medical concerns that will surely need to be addressed but the amount of judgment and abuse hurled at the parents in unfortunate. This family's lot in life cannot be envied.

[Ibtisam]

I don't think we can judge them, I wonder will her mind grow, or will she always be a child mentally as well?

[Khayr]

Originally posted by Naden:

^ What do you think, Khayr?

 

The decision, like the prospect of an infant who will never grow, is no doubt a torture for the parents. It is uncommon but maybe a lesser of two evils for this family. Many disabled women are raped in care facilities which is where adults are eventually housed when elderly parents cannot care for them. It will eliminate any discomfort during menses and fear of pregnancy. It is probably also geared towards inevitable weight gain and to minimize immobility risks.

 

There are medical concerns that will surely need to be addressed but the amount of judgment and abuse hurled at the parents in unfortunate. This family's lot in life cannot be envied.

Ha, this is wherein sentiment takes precedence for family members and the general public over religious principles.

 

I am remembering myself b/c la qadra Allah such a situation would occur, it would be a real test of enormous proportions.

 

This article reminds me of Minority report, wherein someone is presumed guilty due to their thoughts. Wherein, the future is pre-screened and planned for you.

 

Same goes with the issue of Euthanasia-are you the one that HEALS or is ALLAH the HEALER and the One that WILLS IT. Be it good or evil (in our perceptions).

 

As to my thoughts,

 

I can very well compare this to FGM and what parents do in hopes of preventing their kids from committing zina.

You don't know what the future holds and what Allah Wills tomorrow.

They have butchered this child and these parents along with these so called Doctores, should be punished. The hell with sentiment, wrong is wrong and will always be wrong. Such actions are counter Revelation and very Satanic.

[ElPunto]

hmmm - it seems the overriding impetus behind the parents' actions seem to be to minimize any discomforts associated with caring for her. Small so they can lift, no uterus so no child they may have to look after etc

 

It seems to me that the standard of care should be what is best for the health of the child. If the health of the child requires no surgery then no surger should be performed.

[Cara.]

Khayr, seems to me you're the one suffering from an excess of sentiment.

 

She cannot walk, talk, keep her head up, and is fed through a tube.

Her parents did what they felt was best for her. If they wanted convenience they could've smothered her with a pillow.

[ElPunto]

^^Hmmm - but that is the question. Were her parents correct in their actions that they said were 'for the best'? Do you agree?

[Cara.]

ThePoint, I believe they did what was best for her, yes. If I had the mental age of a 3 month infant, I would want my physical body to be in that age range, or as close as could be managed. But of course a 3 month old infant is difficult to question as to her preferences, which is why the judgement of her parents must be considered unless it is in violent opposition to what's best for the child.

 

I've as yet to read a clear argument for letting the girl's body mature that is in the girl's best interests (as opposed to arguments from religious or ideological grounds).

[ElPunto]

^Well - here is an a non-religious and non-ideological argument. Why dismember or 'mutilate' someone if it is not necessary for one's health? And if it is a question of keeping one's mental age in proportion to one's physical age - many who have Down's Syndrome would find themselves affected by this point of view. Where would it stop?

[Naden]

^ Words like 'dismember' and 'mutilate' are unnecessarily sensational and editorialyzing. Medical necessity is one determined by physicians and ultimately agreed upon by family. Have you ever carried a toddler wearing a snow suit? They're bloody heavy and may not be more than 35lbs.

 

Wiping the @ss of a 30lb., 50lb., or even 70lb. child is doable. Carrying them up and down a flight of stairs is difficult. Now, imagine carrying a 150lb. woman. She is also doubly incontinent and unable to turn in bed and prevent bed sores. She is not now but will have eventually become heavy and at serious risk of obesity and resultant stuff like heart and kidney damage. She may still develop health problems but remaining at about 4'5" and 80lb. is what the parents can handle at home. Reducing her health risks may also help delay institutionalization as much as possible.

 

Comparing this family's plight to families with Down's syndrome children is inaccurate. While a range of mental and physical competency exists for this syndrome, many afflicted can gain independence in mainting personal hygiene and even social functioning.

 

I don't know all the details of the case and don't necessarily understand the partial hysterectomy (& leaving the ovaries), but from what I've read it's not an easy decision and certainly not one that extends itself to an approve/disapprove or agree/disagree public discourse.

[Cara.]

Originally posted by ThePoint:

^Well - here is an a non-religious and non-ideological argument. Why dismember or 'mutilate' someone if it is not necessary for one's health?

The parents' rationale includes a whole plethora of health reasons for their decision.

 

And if it is a question of keeping one's mental age in proportion to one's physical age - many who have Down's Syndrome would find themselves affected by this point of view. Where would it stop?

The slippery slope argument is old, saaxiib. It would stop at the point were the surgery would do unacceptable harm to the child, harm that outweighs any benefits. Much like any other surgery, I suppose.

[-Lily-]

Whatever the benifits, I am disturbed she had to undergo unecessary surgeries. So if you are disabled/mentally handicapped you haven't got the right to grow up? I find that very sinister. They chose to have the child, now they should see it through. I find this worse than those parents who choose to abort a severely disabled child.

[N.O.R.F]

The parents obviously wanted to make life easier for themselves in the future and the OP was not 'needed' but 'wanted' by them. But hey whatever allah wills. I would raise my eyebrows more if the parents were muslims but since they aint i cant say i'm too surprised.

[juba]

it sounds scary but i can sympathize with the parents... so KHAYR there is nothing selfish about this...they r obviously willing to care for her for the long run they just want to make that long run easier...they obviously love their child very much

 

allah protect us from such a deliema and sickness

[Khayr]

Originally posted by Northerner Al Burcaawi:

The parents obviously wanted to make life easier for themselves in the future and the OP was not 'needed' but 'wanted' by them. But hey whatever allah wills. I would raise my eyebrows more if the parents were muslims but since they aint i cant say i'm too surprised.

Maybe not too suprised but the fact that such a story is being publicized is worrism. Such scenarios are put in people's heads.

 

What should suprise you, is how other people especially some muslims can justify this. All in the name of- Parental Love. :rolleyes:

 

It is diffentily a slippery slope if the one of the only things to live by is Sentiment e.g. I feel it, so it must be right!

 

Truth becomes secondary and relativized.