Disabled girl's surgery sparks debate

[Guest guest]

: you said it perfectly. I saw a snatch on this on CBS news. I

keep agonizing. Andy and I opted for to have periods, breast

development, etc. because... hell, I don't know why, except that she's a

lovely young woman who needed medical help in this area, and I would

have done it for myself or my older daughter; I cannot see any

differently. I gave her lovely lace bras for Christmas, and you should see

her admiring herself in the mirror. I wouldn't have denied her that

pleasure for anything. Martha

[Guest guest]

martha!

I love this!!! I can just seeing her admiring herself and her new lingerie! I

think you said it best: you would have done it for E and yourself, so K is

included, too.The problems arise of course, but you make the best decision based

what YOU think K would want/need and that's how it goes best for all of you. I

love this picture of --you made me smile very big--and miss you all.

pam

RE: Re: Disabled girl's surgery sparks debate

: you said it perfectly. I saw a snatch on this on CBS news. I

keep agonizing. Andy and I opted for to have periods, breast

development, etc. because... hell, I don't know why, except that she's a

lovely young woman who needed medical help in this area, and I would

have done it for myself or my older daughter; I cannot see any

differently. I gave her lovely lace bras for Christmas, and you should see

her admiring herself in the mirror. I wouldn't have denied her that

pleasure for anything. Martha

[Guest guest]

A mom in one of my other groups posted about this too and I also saw

pictures of the little girl and she is just so beautiful. I have to

admit I feel the same as , I personally don't think I could do

it to my child BUT I am not in their shoes and I don't everything

they are going through, SO I can't say never.

Crystal mom to (11), (3), and Eva (20 month old CHARGEr)

wife to Dan in Illinois

> This article was in the paper this morning. I dont mind

telling you guys

> that it honestly scares the you-know-what out of me. Its so

completely

> disturbing!

>

> Nieder

>

> An American couple have had doctors stunt their disabled nine-year-

old

> daughter's growth in the hopes of keeping her small enough to

enable them to

> care for her.

> has been diagnosed with static encephalopathy, or severe

brain

> damage. She has the mental age of a three- to six-month old. She

cannot

> speak, relies on a feeding tube for nourishment and cannot move on

her own.

>

> Yet the girl is an integral member of her family, who live in

Washington

> state: Her parents say she loves Bocelli's booming voice --

they joke

> the singer is her boyfriend. Her parents and grandparents do

everything for

> her and call her their " pillow angel " because she stays wherever

they put

> her, usually on a pillow.

>

> When started showing signs of puberty early at age six, her

parents

> feared she would quickly grow too big for them to lift. Doctors at

> Children's Hospital in Seattle stunted her growth with high doses

of

> estrogen; she finished the regimen a few weeks ago. They also

removed her

> uterus, appendix and breast buds.

>

> The girl is now 4-foot-5, weighs 65 pounds and is unlikely to get

any

> bigger. Her family says the treatment limited her height by about

20%, or 13

> inches.

>

> The doctors call it growth attenuation therapy. Her parents, who

have not

> disclosed their name, call it the " treatment. "

>

> The controversial case, believed to be the only one of its kind,

is

> prompting a debate over the rights of the disabled and their

caregivers.

> 's doctors published a report on the case in a medical

journal in

> October, prompting comparisons with the Terry Schiavo case in

Florida.

> Critics argue 's treatment made life easier for her family,

but does

> not benefit the girl herself.

>

> " I think we would work to treat the conditions without stripping

[disabled

> people] of what little humanity they still have. This brings me

back to when

> we just lobotomized them, " one reader from Florida wrote on an

online

> message board.

>

> " I can understand a hysterectomy for her health, but more than

that

> practically turns a human being into a doll. "

>

> This week, 's parents launched a blog explaining their

decision. The

> site also features supportive comments from other families caring

for

> disabled children and snapshots of , blue-eyed and smiling

wide.

>

> The treatment, they say, was not a matter of convenience, but

rather an

> attempt to help their daughter.

>

> " Faced with 's medical reality, as her deeply loving

parents, we

> worked with her doctors to do all we could to provide with

the best

> possible quality of life, " they write.

>

> By keeping her small, they say, they can continue to push

around the

> house in her customized stroller and bathe her in a standard-size

bathtub.

> And it takes only one person to lift her, making it easier for her

to be

> moved into the backyard and to social gatherings, instead

of " lying down in

> her bed and staring at TV (or the ceiling) all day long. "

>

> The removal of her breast buds and uterus was also practical. The

procedures

> eliminate any risk of breast cancer and menstrual cramps and make

her

> wheelchair more comfortable (it has a chest strap). They also make

it less

> likely would be sexually abused by a future caregiver, the

parents

> add.

>

> " Some question how God might view this treatment. The God we know

wants

> 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 write.

>

> Some medical ethicists say the medical regimen is " probably

inherently

> wrong. "

>

> " May we redesign disabled people to make them easier to care for? "

asked Dr.

> Margaret Somerville, founder of McGill University's Centre for

Medicine,

> Ethics and Law. She said people should examine their intuitive

reaction to

> the case and question whether it is ethically justified to

override that

> feeling.

>

> " We've got to start from the basic presumption in favour of the

natural. The

> 'natural' is that

>

> she gets all opportunities to develop that anybody else would

have, " she

> explained.

>

> " If we're going to inhibit that natural development, we've got to

have very

> strong justification for doing that. Therefore, the question is:

Is making

> her easier to carry a sufficient justification for that very

invasive

> surgical intervention? "

>

> It is also important to ask whether there are alternatives that

would have

> met the same goals, Dr. Somerville added.

>

> " The alternative is not to change her, but to change the

circumstances in

> which she and her parents find themselves, and to give them human

support

> that will enable the same things to be achieved. "

>

> Indeed, an editorial that ran alongside the report in the Archives

of

> Pediatrics & Adolescent Medicine warned that the strategy proposed

by

> 's doctors is " highly speculative " and " ill advised. "

>

> Dr. Brosco, a Miami pediatrician and co-author of the

editorial,

> asked whether it is " an attempt at a medical fix to what's really

a social

> and political problem " -- parents like 's who do not have

enough

> access to social support and home care.

>

> 's doctors disagree. They say the potential side effects are

minimal

> and the treatment directly benefits their young patient,

regardless of

> whether she is cared for at home, in an institution or in foster

care.

>

> " In reality, being smaller means that she will be moved

more, that

> she will be held more, that she will be bathed more. All of these

things are

> inherently good for herself, " Dr. Gunther, the

pediatric

> endocrinologist who oversaw her treatment, said in an interview.

The

> hospital's ethics committee approved the treatment.

>

> " I understand how people have an initial visceral reaction to this

that is

> negative, " Dr. Gunther conceded. " But if people step back and

really start

> thinking about what is best for this child and what is in her best

> interests, I think many people will come to the conclusion that

this is a

> relatively low-risk procedure with a great deal of benefit for the

child. "

>

> He added the debate has reminded him of a quote from Isaac

Asimov: " Never

> let your sense of morals get in the way of doing what's right. "

>

> Mvallis@...

>

> © National Post 2007

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

I have really been holding back on commenting on this topic. I am a mom of an

older CHARGEr, I can honestly say that it is much easier to care for a smaller

person then a larger one. I feel it is absolutely a private decision of the

parents. I am so excited that both parents are still involved and able to give

her the best care and love possible. We are now having to decide ourselves to

put our son through yet another surgery before we do testosterone therapy which

will then greatly change so many things about our sons care as he starts to grow

and develop. If he gets to be around six feet tall and has adult changes to his

body and temperament, man am I in for it. Now if he has behavior problems I can

handle him ok. I feel very strongly that is depends on the individual and what

their needs are.

Sundi

Re: Disabled girl's surgery sparks debate

A mom in one of my other groups posted about this too and I also saw

pictures of the little girl and she is just so beautiful. I have to

admit I feel the same as , I personally don't think I could do

it to my child BUT I am not in their shoes and I don't everything

they are going through, SO I can't say never.

Crystal mom to (11), (3), and Eva (20 month old CHARGEr)

wife to Dan in Illinois

> This article was in the paper this morning. I dont mind

telling you guys

> that it honestly scares the you-know-what out of me. Its so

completely

> disturbing!

>

> Nieder

>

> An American couple have had doctors stunt their disabled nine-year-

old

> daughter's growth in the hopes of keeping her small enough to

enable them to

> care for her.

> has been diagnosed with static encephalopathy, or severe

brain

> damage. She has the mental age of a three- to six-month old. She

cannot

> speak, relies on a feeding tube for nourishment and cannot move on

her own.

>

> Yet the girl is an integral member of her family, who live in

Washington

> state: Her parents say she loves Bocelli's booming voice --

they joke

> the singer is her boyfriend. Her parents and grandparents do

everything for

> her and call her their " pillow angel " because she stays wherever

they put

> her, usually on a pillow.

>

> When started showing signs of puberty early at age six, her

parents

> feared she would quickly grow too big for them to lift. Doctors at

> Children's Hospital in Seattle stunted her growth with high doses

of

> estrogen; she finished the regimen a few weeks ago. They also

removed her

> uterus, appendix and breast buds.

>

> The girl is now 4-foot-5, weighs 65 pounds and is unlikely to get

any

> bigger. Her family says the treatment limited her height by about

20%, or 13

> inches.

>

> The doctors call it growth attenuation therapy. Her parents, who

have not

> disclosed their name, call it the " treatment. "

>

> The controversial case, believed to be the only one of its kind,

is

> prompting a debate over the rights of the disabled and their

caregivers.

> 's doctors published a report on the case in a medical

journal in

> October, prompting comparisons with the Terry Schiavo case in

Florida.

> Critics argue 's treatment made life easier for her family,

but does

> not benefit the girl herself.

>

> " I think we would work to treat the conditions without stripping

[disabled

> people] of what little humanity they still have. This brings me

back to when

> we just lobotomized them, " one reader from Florida wrote on an

online

> message board.

>

> " I can understand a hysterectomy for her health, but more than

that

> practically turns a human being into a doll. "

>

> This week, 's parents launched a blog explaining their

decision. The

> site also features supportive comments from other families caring

for

> disabled children and snapshots of , blue-eyed and smiling

wide.

>

> The treatment, they say, was not a matter of convenience, but

rather an

> attempt to help their daughter.

>

> " Faced with 's medical reality, as her deeply loving

parents, we

> worked with her doctors to do all we could to provide with

the best

> possible quality of life, " they write.

>

> By keeping her small, they say, they can continue to push

around the

> house in her customized stroller and bathe her in a standard-size

bathtub.

> And it takes only one person to lift her, making it easier for her

to be

> moved into the backyard and to social gatherings, instead

of " lying down in

> her bed and staring at TV (or the ceiling) all day long. "

>

> The removal of her breast buds and uterus was also practical. The

procedures

> eliminate any risk of breast cancer and menstrual cramps and make

her

> wheelchair more comfortable (it has a chest strap). They also make

it less

> likely would be sexually abused by a future caregiver, the

parents

> add.

>

> " Some question how God might view this treatment. The God we know

wants

> 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 write.

>

> Some medical ethicists say the medical regimen is " probably

inherently

> wrong. "

>

> " May we redesign disabled people to make them easier to care for? "

asked Dr.

> Margaret Somerville, founder of McGill University's Centre for

Medicine,

> Ethics and Law. She said people should examine their intuitive

reaction to

> the case and question whether it is ethically justified to

override that

> feeling.

>

> " We've got to start from the basic presumption in favour of the

natural. The

> 'natural' is that

>

> she gets all opportunities to develop that anybody else would

have, " she

> explained.

>

> " If we're going to inhibit that natural development, we've got to

have very

> strong justification for doing that. Therefore, the question is:

Is making

> her easier to carry a sufficient justification for that very

invasive

> surgical intervention? "

>

> It is also important to ask whether there are alternatives that

would have

> met the same goals, Dr. Somerville added.

>

> " The alternative is not to change her, but to change the

circumstances in

> which she and her parents find themselves, and to give them human

support

> that will enable the same things to be achieved. "

>

> Indeed, an editorial that ran alongside the report in the Archives

of

> Pediatrics & Adolescent Medicine warned that the strategy proposed

by

> 's doctors is " highly speculative " and " ill advised. "

>

> Dr. Brosco, a Miami pediatrician and co-author of the

editorial,

> asked whether it is " an attempt at a medical fix to what's really

a social

> and political problem " -- parents like 's who do not have

enough

> access to social support and home care.

>

> 's doctors disagree. They say the potential side effects are

minimal

> and the treatment directly benefits their young patient,

regardless of

> whether she is cared for at home, in an institution or in foster

care.

>

> " In reality, being smaller means that she will be moved

more, that

> she will be held more, that she will be bathed more. All of these

things are

> inherently good for herself, " Dr. Gunther, the

pediatric

> endocrinologist who oversaw her treatment, said in an interview.

The

> hospital's ethics committee approved the treatment.

>

> " I understand how people have an initial visceral reaction to this

that is

> negative, " Dr. Gunther conceded. " But if people step back and

really start

> thinking about what is best for this child and what is in her best

> interests, I think many people will come to the conclusion that

this is a

> relatively low-risk procedure with a great deal of benefit for the

child. "

>

> He added the debate has reminded him of a quote from Isaac

Asimov: " Never

> let your sense of morals get in the way of doing what's right. "

>

> Mvallis@...

>

> © National Post 2007

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Sundi,

I think your comment is very well stated‹it is so hard to know what to do

until/unless you are in the position. I am sure ¹s parents had an

agonizing time with the decision and we have not been privy to how they go

to this point. Thanks for chiming in‹I think we all need to hear from the

older CHARGE contingency more often.

pam

>

>

>

>

> I have really been holding back on commenting on this topic. I am a mom of an

> older CHARGEr, I can honestly say that it is much easier to care for a smaller

> person then a larger one. I feel it is absolutely a private decision of the

> parents. I am so excited that both parents are still involved and able to

> give her the best care and love possible. We are now having to decide

> ourselves to put our son through yet another surgery before we do testosterone

> therapy which will then greatly change so many things about our sons care as

> he starts to grow and develop. If he gets to be around six feet tall and has

> adult changes to his body and temperament, man am I in for it. Now if he has

> behavior problems I can handle him ok. I feel very strongly that is depends

> on the individual and what their needs are.

> Sundi

>

>

> Re: Disabled girl's surgery sparks debate

>

> A mom in one of my other groups posted about this too and I also saw

> pictures of the little girl and she is just so beautiful. I have to

> admit I feel the same as , I personally don't think I could do

> it to my child BUT I am not in their shoes and I don't everything

> they are going through, SO I can't say never.

>

> Crystal mom to (11), (3), and Eva (20 month old CHARGEr)

> wife to Dan in Illinois

>

>

>> > This article was in the paper this morning. I dont mind

> telling you guys

>> > that it honestly scares the you-know-what out of me. Its so

> completely

>> > disturbing!

>> >

>> > Nieder

>> >

>> > An American couple have had doctors stunt their disabled nine-year-

> old

>> > daughter's growth in the hopes of keeping her small enough to

> enable them to

>> > care for her.

>> > has been diagnosed with static encephalopathy, or severe

> brain

>> > damage. She has the mental age of a three- to six-month old. She

> cannot

>> > speak, relies on a feeding tube for nourishment and cannot move on

> her own.

>> >

>> > Yet the girl is an integral member of her family, who live in

> Washington

>> > state: Her parents say she loves Bocelli's booming voice --

> they joke

>> > the singer is her boyfriend. Her parents and grandparents do

> everything for

>> > her and call her their " pillow angel " because she stays wherever

> they put

>> > her, usually on a pillow.

>> >

>> > When started showing signs of puberty early at age six, her

> parents

>> > feared she would quickly grow too big for them to lift. Doctors at

>> > Children's Hospital in Seattle stunted her growth with high doses

> of

>> > estrogen; she finished the regimen a few weeks ago. They also

> removed her

>> > uterus, appendix and breast buds.

>> >

>> > The girl is now 4-foot-5, weighs 65 pounds and is unlikely to get

> any

>> > bigger. Her family says the treatment limited her height by about

> 20%, or 13

>> > inches.

>> >

>> > The doctors call it growth attenuation therapy. Her parents, who

> have not

>> > disclosed their name, call it the " treatment. "

>> >

>> > The controversial case, believed to be the only one of its kind,

> is

>> > prompting a debate over the rights of the disabled and their

> caregivers.

>> > 's doctors published a report on the case in a medical

> journal in

>> > October, prompting comparisons with the Terry Schiavo case in

> Florida.

>> > Critics argue 's treatment made life easier for her family,

> but does

>> > not benefit the girl herself.

>> >

>> > " I think we would work to treat the conditions without stripping

> [disabled

>> > people] of what little humanity they still have. This brings me

> back to when

>> > we just lobotomized them, " one reader from Florida wrote on an

> online

>> > message board.

>> >

>> > " I can understand a hysterectomy for her health, but more than

> that

>> > practically turns a human being into a doll. "

>> >

>> > This week, 's parents launched a blog explaining their

> decision. The

>> > site also features supportive comments from other families caring

> for

>> > disabled children and snapshots of , blue-eyed and smiling

> wide.

>> >

>> > The treatment, they say, was not a matter of convenience, but

> rather an

>> > attempt to help their daughter.

>> >

>> > " Faced with 's medical reality, as her deeply loving

> parents, we

>> > worked with her doctors to do all we could to provide with

> the best

>> > possible quality of life, " they write.

>> >

>> > By keeping her small, they say, they can continue to push

> around the

>> > house in her customized stroller and bathe her in a standard-size

> bathtub.

>> > And it takes only one person to lift her, making it easier for her

> to be

>> > moved into the backyard and to social gatherings, instead

> of " lying down in

>> > her bed and staring at TV (or the ceiling) all day long. "

>> >

>> > The removal of her breast buds and uterus was also practical. The

> procedures

>> > eliminate any risk of breast cancer and menstrual cramps and make

> her

>> > wheelchair more comfortable (it has a chest strap). They also make

> it less

>> > likely would be sexually abused by a future caregiver, the

> parents

>> > add.

>> >

>> > " Some question how God might view this treatment. The God we know

> wants

>> > 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 write.

>> >

>> > Some medical ethicists say the medical regimen is " probably

> inherently

>> > wrong. "

>> >

>> > " May we redesign disabled people to make them easier to care for? "

> asked Dr.

>> > Margaret Somerville, founder of McGill University's Centre for

> Medicine,

>> > Ethics and Law. She said people should examine their intuitive

> reaction to

>> > the case and question whether it is ethically justified to

> override that

>> > feeling.

>> >

>> > " We've got to start from the basic presumption in favour of the

> natural. The

>> > 'natural' is that

>> >

>> > she gets all opportunities to develop that anybody else would

> have, " she

>> > explained.

>> >

>> > " If we're going to inhibit that natural development, we've got to

> have very

>> > strong justification for doing that. Therefore, the question is:

> Is making

>> > her easier to carry a sufficient justification for that very

> invasive

>> > surgical intervention? "

>> >

>> > It is also important to ask whether there are alternatives that

> would have

>> > met the same goals, Dr. Somerville added.

>> >

>> > " The alternative is not to change her, but to change the

> circumstances in

>> > which she and her parents find themselves, and to give them human

> support

>> > that will enable the same things to be achieved. "

>> >

>> > Indeed, an editorial that ran alongside the report in the Archives

> of

>> > Pediatrics & Adolescent Medicine warned that the strategy proposed

> by

>> > 's doctors is " highly speculative " and " ill advised. "

>> >

>> > Dr. Brosco, a Miami pediatrician and co-author of the

> editorial,

>> > asked whether it is " an attempt at a medical fix to what's really

> a social

>> > and political problem " -- parents like 's who do not have

> enough

>> > access to social support and home care.

>> >

>> > 's doctors disagree. They say the potential side effects are

> minimal

>> > and the treatment directly benefits their young patient,

> regardless of

>> > whether she is cared for at home, in an institution or in foster

> care.

>> >

>> > " In reality, being smaller means that she will be moved

> more, that

>> > she will be held more, that she will be bathed more. All of these

> things are

>> > inherently good for herself, " Dr. Gunther, the

> pediatric

>> > endocrinologist who oversaw her treatment, said in an interview.

> The

>> > hospital's ethics committee approved the treatment.

>> >

>> > " I understand how people have an initial visceral reaction to this

> that is

>> > negative, " Dr. Gunther conceded. " But if people step back and

> really start

>> > thinking about what is best for this child and what is in her best

>> > interests, I think many people will come to the conclusion that

> this is a

>> > relatively low-risk procedure with a great deal of benefit for the

> child. "

>> >

>> > He added the debate has reminded him of a quote from Isaac

> Asimov: " Never

>> > let your sense of morals get in the way of doing what's right. "

>> >

>> > Mvallis@...

>> >

>> > © National Post 2007

>> >

>> >

>> >

>> >

>> >

>> > __________________________________________________

>> >

[Guest guest]

a Zahn is about to do a piece on this story on CNN. Not sure of

the time. She's on now.

Janay

Rasha's Mom

> >> > This article was in the paper this morning. I dont mind

> > telling you guys

> >> > that it honestly scares the you-know-what out of me. Its so

> > completely

> >> > disturbing!

> >> >

> >> > Nieder

> >> >

> >> > An American couple have had doctors stunt their disabled nine-

year-

> > old

> >> > daughter's growth in the hopes of keeping her small enough to

> > enable them to

> >> > care for her.

> >> > has been diagnosed with static encephalopathy, or

severe

> > brain

> >> > damage. She has the mental age of a three- to six-month old.

She

> > cannot

> >> > speak, relies on a feeding tube for nourishment and cannot

move on

> > her own.

> >> >

> >> > Yet the girl is an integral member of her family, who live in

> > Washington

> >> > state: Her parents say she loves Bocelli's booming

voice --

> > they joke

> >> > the singer is her boyfriend. Her parents and grandparents do

> > everything for

> >> > her and call her their " pillow angel " because she stays

wherever

> > they put

> >> > her, usually on a pillow.

> >> >

> >> > When started showing signs of puberty early at age

six, her

> > parents

> >> > feared she would quickly grow too big for them to lift.

Doctors at

> >> > Children's Hospital in Seattle stunted her growth with high

doses

> > of

> >> > estrogen; she finished the regimen a few weeks ago. They also

> > removed her

> >> > uterus, appendix and breast buds.

> >> >

> >> > The girl is now 4-foot-5, weighs 65 pounds and is unlikely to

get

> > any

> >> > bigger. Her family says the treatment limited her height by

about

> > 20%, or 13

> >> > inches.

> >> >

> >> > The doctors call it growth attenuation therapy. Her parents,

who

> > have not

> >> > disclosed their name, call it the " treatment. "

> >> >

> >> > The controversial case, believed to be the only one of its

kind,

> > is

> >> > prompting a debate over the rights of the disabled and their

> > caregivers.

> >> > 's doctors published a report on the case in a medical

> > journal in

> >> > October, prompting comparisons with the Terry Schiavo case in

> > Florida.

> >> > Critics argue 's treatment made life easier for her

family,

> > but does

> >> > not benefit the girl herself.

> >> >

> >> > " I think we would work to treat the conditions without

stripping

> > [disabled

> >> > people] of what little humanity they still have. This brings

me

> > back to when

> >> > we just lobotomized them, " one reader from Florida wrote on an

> > online

> >> > message board.

> >> >

> >> > " I can understand a hysterectomy for her health, but more than

> > that

> >> > practically turns a human being into a doll. "

> >> >

> >> > This week, 's parents launched a blog explaining their

> > decision. The

> >> > site also features supportive comments from other families

caring

> > for

> >> > disabled children and snapshots of , blue-eyed and

smiling

> > wide.

> >> >

> >> > The treatment, they say, was not a matter of convenience, but

> > rather an

> >> > attempt to help their daughter.

> >> >

> >> > " Faced with 's medical reality, as her deeply loving

> > parents, we

> >> > worked with her doctors to do all we could to provide

with

> > the best

> >> > possible quality of life, " they write.

> >> >

> >> > By keeping her small, they say, they can continue to push

> > around the

> >> > house in her customized stroller and bathe her in a standard-

size

> > bathtub.

> >> > And it takes only one person to lift her, making it easier

for her

> > to be

> >> > moved into the backyard and to social gatherings, instead

> > of " lying down in

> >> > her bed and staring at TV (or the ceiling) all day long. "

> >> >

> >> > The removal of her breast buds and uterus was also practical.

The

> > procedures

> >> > eliminate any risk of breast cancer and menstrual cramps and

make

> > her

> >> > wheelchair more comfortable (it has a chest strap). They also

make

> > it less

> >> > likely would be sexually abused by a future caregiver,

the

> > parents

> >> > add.

> >> >

> >> > " Some question how God might view this treatment. The God we

know

> > wants

> >> > 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 write.

> >> >

> >> > Some medical ethicists say the medical regimen is " probably

> > inherently

> >> > wrong. "

> >> >

> >> > " May we redesign disabled people to make them easier to care

for? "

> > asked Dr.

> >> > Margaret Somerville, founder of McGill University's Centre for

> > Medicine,

> >> > Ethics and Law. She said people should examine their intuitive

> > reaction to

> >> > the case and question whether it is ethically justified to

> > override that

> >> > feeling.

> >> >

> >> > " We've got to start from the basic presumption in favour of

the

> > natural. The

> >> > 'natural' is that

> >> >

> >> > she gets all opportunities to develop that anybody else would

> > have, " she

> >> > explained.

> >> >

> >> > " If we're going to inhibit that natural development, we've

got to

> > have very

> >> > strong justification for doing that. Therefore, the question

is:

> > Is making

> >> > her easier to carry a sufficient justification for that very

> > invasive

> >> > surgical intervention? "

> >> >

> >> > It is also important to ask whether there are alternatives

that

> > would have

> >> > met the same goals, Dr. Somerville added.

> >> >

> >> > " The alternative is not to change her, but to change the

> > circumstances in

> >> > which she and her parents find themselves, and to give them

human

> > support

> >> > that will enable the same things to be achieved. "

> >> >

> >> > Indeed, an editorial that ran alongside the report in the

Archives

> > of

> >> > Pediatrics & Adolescent Medicine warned that the strategy

proposed

> > by

> >> > 's doctors is " highly speculative " and " ill advised. "

> >> >

> >> > Dr. Brosco, a Miami pediatrician and co-author of the

> > editorial,

> >> > asked whether it is " an attempt at a medical fix to what's

really

> > a social

> >> > and political problem " -- parents like 's who do not

have

> > enough

> >> > access to social support and home care.

> >> >

> >> > 's doctors disagree. They say the potential side

effects are

> > minimal

> >> > and the treatment directly benefits their young patient,

> > regardless of

> >> > whether she is cared for at home, in an institution or in

foster

> > care.

> >> >

> >> > " In reality, being smaller means that she will be moved

> > more, that

> >> > she will be held more, that she will be bathed more. All of

these

> > things are

> >> > inherently good for herself, " Dr. Gunther, the

> > pediatric

> >> > endocrinologist who oversaw her treatment, said in an

interview.

> > The

> >> > hospital's ethics committee approved the treatment.

> >> >

> >> > " I understand how people have an initial visceral reaction to

this

> > that is

> >> > negative, " Dr. Gunther conceded. " But if people step back and

> > really start

> >> > thinking about what is best for this child and what is in her

best

> >> > interests, I think many people will come to the conclusion

that

> > this is a

> >> > relatively low-risk procedure with a great deal of benefit

for the

> > child. "

> >> >

> >> > He added the debate has reminded him of a quote from Isaac

> > Asimov: " Never

> >> > let your sense of morals get in the way of doing what's

right. "

> >> >

> >> > Mvallis@

> >> >

> >> > © National Post 2007

> >> >

> >> >

> >> >

> >> >

> >> >

> >> > __________________________________________________

> >> >