Disabled girl's surgery sparks debate

January 5, 2007

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@...

January 5, 2007

-

I got that too and found it disturbing. ly, it was more than I wanted

to contemplate so I deleted and tried to forget it.

Michele W - playing ostrich today :-)

January 5, 2007

sarah, you put this all very well. i was also shocked by the article, but

then aol asked you to vote on if you agreed and i could not decide.

my daughter is 11, she is still in diapers, i dread thinking about what is

ahead. she also does not walk yet on her own, my back is killing me from

helping her walk or trasnferring her.

so yes i can understand what they did, would i, i dont think so, but you

cant judge someone especially if you havent walked in their shoes.

Cathie, mom to 11 yr CHARGEr

January 5, 2007

wow scares me to

>

> -

>

> I got that too and found it disturbing. ly, it was more than I wanted

> to contemplate so I deleted and tried to forget it.

>

> Michele W - playing ostrich today :-)

>

January 5, 2007

I know I risk of having an unpopular opinion on this, but...

When I first read story, I had the same reaction as and

Michele--that it was a horrible thing to do to this girl. But then I thought

about it some more. I don't think the person who wrote this story did a good

job of being un-biased, and I think the quotes used from the family make it

sound as if they made the choice purely for the sake of convienience.

I don't know what it's like to care for a child who is that severly mentaly

disabled--I don't know how much of a physical and emotional toll that can take

on a person because I haven't experienced it. And because of that, I don't

think that it's fair for me to judge the decision they made, especially based

only on the information from this article.

I think most of us would agree that the girl is going to get better care the

longer she can remain at home, as opposed to being in an institution. From

living in the state of Washington, I do know that waiver programs designed to

keep people at home are available to families with children like this girl. I

also know from living here in the state of Washington, that I personally have

been under-whelmed with the assistance available for special-needs kids, and the

" ease " of obtaining said assistance. I know that several years back there was a

big crack-down on the waiver program and it's much, much harder to get on one

now than it used to be. I'd like to think it would be pretty clear-cut this

girl would qualify for some type of waiver that includes home care

assistance...but if she is medically stable I don't know that she would.

I have read posts on this list-serve of parents of severely affected CHARGE

kids approaching adult-hood, and the stories about dealing with matters of

toileting, and personal hygiene are difficult to read and heartbreaking. I can

only imagine that dealing with menstration in a full size woman with the mental

ability of a baby would be very hard. Choosing to have her reporductive organs

removed is a practical way of avoiding this.

I have a harder time rationalizing the removal of her breasts, but I also

place a lot of faith in the Children's Hospital ethics committee. Children's is

a top-notch, regional hospital and they are affiliated with the University of

Washington School of Medicine. Are they perfect--No. But I have a very hard

time believing the hospital ethics committee would allow a controversial

procedure to take place without seriously considering what was in the best

interest of the child. This is the same hospital that last summer put out an

Amber Alert for a mother who took her son from Children's against orders because

the doctors told her the child needed to be on dialysis and she refused because

she didn't think anything was wrong. That's pretty ethical in my book.

I can't judge this family for what they did--I think their situation

definately falls into the " gray area. " Would I chose differently if I were in

their place? I'd like to think that I would, but it's a lot easier to make

decisions from the outside, when you don't have an emotional investment in the

outcome.

(mom to Evan, 17.5 months)

Nieder wrote:

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@...

__________________________________________________

January 5, 2007

sarah godo post good ideas yes that is true there r lots of stuff

>

> I know I risk of having an unpopular opinion on this, but...

>

> When I first read story, I had the same reaction as and

> Michele--that it was a horrible thing to do to this girl. But then I thought

> about it some more. I don't think the person who wrote this story did a good

> job of being un-biased, and I think the quotes used from the family make it

> sound as if they made the choice purely for the sake of convienience.

>

> I don't know what it's like to care for a child who is that severly

> mentaly disabled--I don't know how much of a physical and emotional toll

> that can take on a person because I haven't experienced it. And because of

> that, I don't think that it's fair for me to judge the decision they made,

> especially based only on the information from this article.

>

> I think most of us would agree that the girl is going to get better care

> the longer she can remain at home, as opposed to being in an institution.

> From living in the state of Washington, I do know that waiver programs

> designed to keep people at home are available to families with children like

> this girl. I also know from living here in the state of Washington, that I

> personally have been under-whelmed with the assistance available for

> special-needs kids, and the " ease " of obtaining said assistance. I know that

> several years back there was a big crack-down on the waiver program and it's

> much, much harder to get on one now than it used to be. I'd like to think it

> would be pretty clear-cut this girl would qualify for some type of waiver

> that includes home care assistance...but if she is medically stable I don't

> know that she would.

>

> I have read posts on this list-serve of parents of severely affected

> CHARGE kids approaching adult-hood, and the stories about dealing with

> matters of toileting, and personal hygiene are difficult to read and

> heartbreaking. I can only imagine that dealing with menstration in a full

> size woman with the mental ability of a baby would be very hard. Choosing to

> have her reporductive organs removed is a practical way of avoiding this.

>

> I have a harder time rationalizing the removal of her breasts, but I also

> place a lot of faith in the Children's Hospital ethics committee. Children's

> is a top-notch, regional hospital and they are affiliated with the

> University of Washington School of Medicine. Are they perfect--No. But I

> have a very hard time believing the hospital ethics committee would allow a

> controversial procedure to take place without seriously considering what was

> in the best interest of the child. This is the same hospital that last

> summer put out an Amber Alert for a mother who took her son from Children's

> against orders because the doctors told her the child needed to be on

> dialysis and she refused because she didn't think anything was wrong. That's

> pretty ethical in my book.

>

> I can't judge this family for what they did--I think their situation

> definately falls into the " gray area. " Would I chose differently if I were

> in their place? I'd like to think that I would, but it's a lot easier to

> make decisions from the outside, when you don't have an emotional investment

> in the outcome.

>

> (mom to Evan, 17.5 months)

>

> Nieder <christine-ann@... <christine-ann%40shaw.ca>> wrote:

> 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@... <Mvallis%40nationalpost.com>

>

> ï¿½ National Post 2007

>

> __________________________________________________

>

January 6, 2007

-

I think you're right on the money. Part of the " disturbance " to me was the

difficulty in putting myself in the shoes of those parents. At first

glance, it seems like a horrible thing to do to a person. But if I had to

make the same decision in the same situation, I can't be sure what I'd

choose. I guess the disturbing part is that any parent has to consider such

drastic measures for their child. When you think about all of the parents

out there right at this minute facing incredibly difficult decisions for

their children, it is heartbreaking.

Michele W

Aubrie's mom

January 6, 2007

and Michele:

You are so correct. And any decisions can be tempered by real prognosis,

circumstances, and so many other facets. We all have to work with the best

options available, and make our decisions based on what appears to be the

best information. We have all been in those cases where we know that we

have been old what our options are and having to choose as we feel best

suits the circumstance. This even applies to communication and education.

I think we all have those " could I have done better or made a better choice "

circumstances. We do what we think is the best for our circumstances and,

hopefully, for our children.

I think we lose sight of how many momentous, possibly life-changing

decisions we make daily regarding our children. What a huge responsibility.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Michele Westmaas

Sent: Friday, January 05, 2007 7:30 PM

To: CHARGE

Subject: RE: Disabled girl's surgery sparks debate

-

I think you're right on the money. Part of the " disturbance " to me was the

difficulty in putting myself in the shoes of those parents. At first

glance, it seems like a horrible thing to do to a person. But if I had to

make the same decision in the same situation, I can't be sure what I'd

choose. I guess the disturbing part is that any parent has to consider such

drastic measures for their child. When you think about all of the parents

out there right at this minute facing incredibly difficult decisions for

their children, it is heartbreaking.

Michele W

Aubrie's mom

January 6, 2007

marylyn ur so right bout the decisons look at the mock fam with cedie they

had a hard decision to make and i believe god made it for them but those r

very hard life and death would b hardest of all i reckon hugs to all ellen

>

> and Michele:

>

> You are so correct. And any decisions can be tempered by real prognosis,

> circumstances, and so many other facets. We all have to work with the best

> options available, and make our decisions based on what appears to be the

> best information. We have all been in those cases where we know that we

> have been old what our options are and having to choose as we feel best

> suits the circumstance. This even applies to communication and education.

> I think we all have those " could I have done better or made a better

> choice "

> circumstances. We do what we think is the best for our circumstances and,

> hopefully, for our children.

>

> I think we lose sight of how many momentous, possibly life-changing

> decisions we make daily regarding our children. What a huge

> responsibility.

>

> Friends in CHARGE,

>

> Marilyn Ogan

>

> Mom of (14 yrs, CHARGE+ JRA)

>

> Mom of Ken (17 yrs, Asperger's)

>

> Wife of Rick

>

> oganm@... <oganm%40insightbb.com>

>

> _____

>

> From: CHARGE <CHARGE%40yahoogroups.com> [mailto:

> CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of

> Michele Westmaas

> Sent: Friday, January 05, 2007 7:30 PM

> To: CHARGE <CHARGE%40yahoogroups.com>

> Subject: RE: Disabled girl's surgery sparks debate

>

> -

>

> I think you're right on the money. Part of the " disturbance " to me was the

> difficulty in putting myself in the shoes of those parents. At first

> glance, it seems like a horrible thing to do to a person. But if I had to

> make the same decision in the same situation, I can't be sure what I'd

> choose. I guess the disturbing part is that any parent has to consider

> such

> drastic measures for their child. When you think about all of the parents

> out there right at this minute facing incredibly difficult decisions for

> their children, it is heartbreaking.

>

> Michele W

> Aubrie's mom

>

January 6, 2007

The parents decision raises many questions about the value and quality

of life in our culture. It's easy for someone who has never had to care

for a child with special needs to make a judgment about someone who

does. That being said, in the discussion thread about this incident I

didn't see anyone post the link to the family's blog so here it is:

http://ashleytreatment.spaces.live.com/blog/.

After reading it I gained a different perspective of the family which I

think is somewhat different than what has been conveyed in the media.

I just wanted to add this bit of information. Especially since it's my

understanding that the family has chosen not to speak to any more media.

Mom to Cameron 4 1/2, CHARGE and , 6 1/2

January 6, 2007

hmmmmmm u no soemthing oen of my best firends head flops she cant talk or

walk but hey her parents let her grow so tall that shes taller than them LOL

>

> The parents decision raises many questions about the value and quality

> of life in our culture. It's easy for someone who has never had to care

> for a child with special needs to make a judgment about someone who

> does. That being said, in the discussion thread about this incident I

> didn't see anyone post the link to the family's blog so here it is:

>

http://ashleytreatment.spaces.live.com/blog/.<http://ashleytreatment.spaces.live\

..com/blog/>

> After reading it I gained a different perspective of the family which I

> think is somewhat different than what has been conveyed in the media.

>

> I just wanted to add this bit of information. Especially since it's my

> understanding that the family has chosen not to speak to any more media.

>

> Mom to Cameron 4 1/2, CHARGE and , 6 1/2

>

January 6, 2007

, that left me with an ugly feeling - I'm not 100% sure how I

feel. I can see both sides of it but it doesn't feel right at all...

Lis

>

> 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@... <Mvallis%40nationalpost.com>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

January 6, 2007

no they removered her breat because of a high rick of cancer in both

families also for her confort as they were afaird her starps would hurt her and

she

be uncomtiable laying down in what the article said....wendy y

January 6, 2007

I'm at a loss about this one. I think how Andy and I agonized just about

putting on hormones. I've known one person here who opted for

sterilization for her child. I didn't approve, but it wasn't any of my

business.

I'm frankly ill just thinking about this case. I do not know what I'd do with a

child at this developmental level. I'd like to think I know, but I don't. I

hope I

stopped making such judgments long ago.

For those of you with girls who're being urged to move to hormonal

treatment to bring on puberty, this might be the time for me to say, wow, it

can be messy, but mood, etc. improve (at least in 's case) --- and it

apparently does one hell of a lot for the bones. I don't like it, but it truly

seems to help .

I guess many of us are wringing our hands over this one.

Martha

??? I don't understand removing breast buds...

January 6, 2007

I, personally, had a hard time just reading about this and a friend

and I spent an hour on the phone in discussion about it.

It's been a long time since I have written, I read the messages

every day. is doing awesome in her " new " home, she has been

there almost a year now!! If you remember, her Mom passed away last

Jan. and she had been transitioning to this home over the holidays.

is 72lbs. now and getting tall, is thriving in her house

with her roommates and is as social as ever. I call the house

and " talk " with her for a bit and then with the staff, a few days a

week.

I, for one, do not agree with what 's parents have done, but

that is my opinion. I have never been a parent to a child with

intense medical needs but have been a caregiver to several. I have

suggested to a prent with a severely autistic young adult to consider

birth control because of her being so vulnerable to those in the

community. She wanders and is non verbal. 's Mom had chosen

not to do the growth hormones as she had said " she can be a bitch

sometimes, so I am not going to make it happen monthy. " I believe

that she still cycles, as her behaviors do become more intense at

certain times of the month. (This does, however, bring up thatI need

to contact the head staff to see what they would do about a female

exam). I am scared for her on that part, as she is tiny and would

feel very violated if she were to have a female exam, not to mention

hurt. Her Mom did die of uterine cancer, so I would think at some

point this woulneed to be done.

Is it to late to start hormones? I think that her staff are happy

with how she is and starting things this late may cause issues. They

have my CHARGE manual, thoughI don't know how much was read into it.

Everyone is so good though, she is taken to the doc regularly and

they work hard to keep her weight on. 's Dad took her to his

house for Christmas, I know that it was hard for him but I think that

between him and her 2 brothers they got through it. I know that

knows that Mom is gone, I for one, tear up when I talk about

it to her, but know that she is happy and well taken care of where

she is. In addition, I am actively involved in her life and am still

called by staff for bits of information.

, friend and past caregiver to , 26 CHARGE

January 6, 2007

They removed her breasts so she wouldnt be sexually abused?

that is the one thing that really really got to me.....not sure why

I also dont want to judge too much though, i dont feel we shoudl really

judge because we arnt in their shoes..

January 6, 2007

yeah, they said something about it preventing sexual abuse too though

>

> no they removered her breat because of a high rick of cancer in both

> families also for her confort as they were afaird her starps would hurt

> her and she

> be uncomtiable laying down in what the article said....wendy y

>

January 6, 2007

Hi ,

Thanks for posting this link & bringing some additional fact to our

discussion.

Regardless of what your feelings are on this issue, if you haven't read the

family blog I highly recommend it. I gained a lot of compassion and

understanding towards their decision by reading about it in their words (and

they do explain why they chose to remove her breast buds).

(mom to Evan 17.5 months)

wrote:

The parents decision raises many questions about the value and quality

of life in our culture. It's easy for someone who has never had to care

for a child with special needs to make a judgment about someone who

does. That being said, in the discussion thread about this incident I

didn't see anyone post the link to the family's blog so here it is:

http://ashleytreatment.spaces.live.com/blog/.

After reading it I gained a different perspective of the family which I

think is somewhat different than what has been conveyed in the media.

I just wanted to add this bit of information. Especially since it's my

understanding that the family has chosen not to speak to any more media.

Mom to Cameron 4 1/2, CHARGE and , 6 1/2

__________________________________________________

January 6, 2007

One of the biggest lessons I have learned from having a child with CHARGE

Syndrome is to respect the decisions parents make regarding their children. We

have all had to decide issues such as whether or not to have particular

surgeries, whether to care for the child at home or consider a placement,

whether to try " alternative " treatments, what sort of school placement is best,

whether to use sign language, etc., etc. These are all difficult questions that

include the current happiness of the child, the likelihood of long-term

improvement from certain courses of action, the weight to place on medical and

other expert advice, the effect on other children in the family, monetary and

other practical considerations, and much more. I respect parents' decisions

within a pretty wide range of reasonableness and think that often there is no

one " right " decision.

The posts I have read on this topic on the CHARGE website have been respectful

and intelligent. What bothers me about this case are talk show hosts like the

always-abrasive Grace who are quick to condemn this family. We all have

to do what in our minds and gut we think is the best, and I think that's what

's parents did here.

-Mike Schwartz in Ventura, CA

January 6, 2007

Yes that was in the article as well (about the breast removal). And thats one of

the reasons I was so disturbed. It says a lot of about our society when people

consider doing that for that reason! It really is interesting, because I do see

parents point of view on this, but I keep looking at it from an disabled adults

perspective. First off, I dont trust the hospitals ethics committee one bit.

Sorry, but I was put through several unessisary procedures as a child that never

should have happened. Not to the extreme that the little girl went through, but

they should have never happened nonetheless. I guess my other issue is, who is

anyone to say she herself doesnt understand whats going on and that is her

wishes? We have seen time and time again that kids understand more of whats

going on then people give them credit for. The other thing is, this is

non-reversable. She now has to live like this the rest of her life. Thats just

not fair to her. What I also wonder is, if the parents need assistance in taking

care of her, where is the government in all this? Should they not be assisting

with covering costs of an at home nurse? I know the medical system is very

different here in Canada, and that is something that would be a given. I have to

admit, our free medicare for people with disabilities is one thing I am very

grateful for here in canada! If it was just the hormone therapy to stunt her

growth, I could live with that, but the removal of her uteris and breasts really

does disturb me. Thats a part of her, and I really hope I dont offend any

parents here, but I just dont think thats a decision that people can make. Even

if its a risk of cancer. If we started doing things because of risks, well....

Thats life. We all have risks whether its medical, work related, where you live

and so on. Just my 2 cents.

Charge Adult

Re: Re: Disabled girl's surgery sparks debate

yeah, they said something about it preventing sexual abuse too though

>

> no they removered her breat because of a high rick of cancer in both

> families also for her confort as they were afaird her starps would hurt

> her and she

> be uncomtiable laying down in what the article said....wendy y

>

January 6, 2007

It has been on the news in the UK, family, friends and my initial

reactions were OMG how could they do this!! I have since back peddled,

read their blog and the truth is she is in a very loving caring family

who made decisions of what they think is best for her...dont we as

parents do this most days of the week with our special needs

children!! who's to say we get it right or wrong, we love and care and

do the best we can in a bad situation.

We must be non-judgemental and without prejudice. Les x

> Yes that was in the article as well (about the breast removal). And thats

> one of the reasons I was so disturbed. It says a lot of about our society

> when people consider doing that for that reason! It really is interesting,

> because I do see parents point of view on this, but I keep looking at it

> from an disabled adults perspective. First off, I dont trust the hospitals

> ethics committee one bit. Sorry, but I was put through several unessisary

> procedures as a child that never should have happened. Not to the extreme

> that the little girl went through, but they should have never happened

> nonetheless. I guess my other issue is, who is anyone to say she herself

> doesnt understand whats going on and that is her wishes? We have seen time

> and time again that kids understand more of whats going on then people give

> them credit for. The other thing is, this is non-reversable. She now has to

> live like this the rest of her life. Thats just not fair to her. What I also

> wonder is, if the parents need assistance in taking care of her, where is

> the government in all this? Should they not be assisting with covering costs

> of an at home nurse? I know the medical system is very different here in

> Canada, and that is something that would be a given. I have to admit, our

> free medicare for people with disabilities is one thing I am very grateful

> for here in canada! If it was just the hormone therapy to stunt her growth,

> I could live with that, but the removal of her uteris and breasts really

> does disturb me. Thats a part of her, and I really hope I dont offend any

> parents here, but I just dont think thats a decision that people can make.

> Even if its a risk of cancer. If we started doing things because of risks,

> well.... Thats life. We all have risks whether its medical, work related,

> where you live and so on. Just my 2 cents.

>

> Charge Adult

>

> Re: Re: Disabled girl's surgery sparks debate

>

> yeah, they said something about it preventing sexual abuse too though

>

> >

> > no they removered her breat because of a high rick of cancer in both

> > families also for her confort as they were afaird her starps would hurt

> > her and she

> > be uncomtiable laying down in what the article said....wendy y

> >

January 7, 2007

-

I'm glad to hear your update. Sounds like is doing well in her new

home. I remember how you agonized over letting her go. Sounds like it's

worked out ok for both of you. You've maintained your friendship and your

connection to her caregivers, but you are able to move on with your own life

as well.

Thanks for sharing. Update us again sometime soon.

Michele W

Aubrie's mom

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

courtneyandheather

Sent: Saturday, January 06, 2007 1:51 AM

To: CHARGE

Subject: Re: Disabled girl's surgery sparks debate