'Ashley Treatment' Questioned By Parents

Ethicists And Parents Of Children With Disabilities Ask If Stunting Child's Growth Is Best

(CBS)  Her name is Ashley and she's 9 years old.

But she has the mental and physical abilities of a 3-month-old, and will for the rest of her life.

Two years ago, her parents made a decision to essentially freeze her in time with a treatment called growth attenuation therapy. CBS News correspondent Michelle Miller reports.

"What they were asking to do was something that many of us hadn't thought about doing before," says Dr. Dough Diekema of Seattle Children’s Hospital.

Diekema was part of the team at the hospital that decided the ethics of the treatment, which in Ashley's case included a hysterectomy, removal of her breast buds, and high doses of estrogen — all to keep her from growing any larger.

"I don't think there was any question in our minds that the parents were acting in Ashley’s best interests," says Diekema.

The case was virtually unknown outside the medical community until Ashley's parents told their story on a blog New Year's Day.

Her parents explained "Ashley's smaller and lighter size makes it more possible to include her in the typical family life."

But some parents of disabled children disagree with the choice.

"Just to put them through surgery for what it seems like your own convenience seems severe," says Ellie Stein, whose two children, Chavi and Isaac, both suffer from a rare genetic disorder that has left them immobile and unable to speak.

While she disagrees with "The Ashley Treatment" she understands how tough it is to provide care as children with severe disabilities grow.

"Care giving is very, very difficult. It’s emotionally stressful, its physically stressful, it's a nonstop job," says Stein.

Ethicists, like Dr. Chris Futner of the Children’s Hospital of Philadelphia, are troubled by Ashley's case. They're concerned that as severely disabled children live longer — more parents may face these kinds of choices.

"Our society has a tendency to want to solve big social problems with easy, relatively speaking, technological fixes. It's a very tempting way out of the problem."

Ashley's parents did not respond to CBS News’ request for an interview. In just five days their blog has received more than 1 million hits.

[justfacts2]

Wanna hear something even more shocking? People with disabilities are now using in vitro to guarantee that their children will be born with the same disabilities that they are! How about this subject people? I am interested to hear about these comments.

[susanhelit]

Ashley does have a nice smile - it's not a life anyone would choose for their daughter, but it's obvious they're making the best of it for her that they can. She seems happy.

[hermit22]

SusanHelit,thank you for speaking so well about a subject that many judgemental people have no clue about.

Look at the smile on little Ashley's face. Maybe 60 years from now, she will still be wearing it!

www.joniandfriends.org

is a fine site.

[susanhelit]

susieq - you're exactly who Ashley's parents would like to help - if only this treatment had been available for you, your daughter could still be living at home, cared for by family, rather than a home (which, however good, is just not as good as a loving family). That's why I see them as heroes - they've found a way to possibly enable the parents of severely mentally disabled children to keep their children with them, to live at home with family, rather than in a care home. It's a wonderful thing.

It's not appropriate for most disabilities, anything where there is a chance of improvement, but for many, very tragic cases, it's the one chance for the child to have the happiest life possible.

[susanhelit]

ncolens - what a sick post, to jump right to that sick assumption from reading the parents blog.

As they state, quite clearly, they're thinking not only for now (and even now, all parents might require a break, get sick, or otherwise end up with a temporary caregiver!), but also for Ashley's future, when they're long gone.

Ashley's life is their concern, and having the body of a child with the mind of an infant, is the best they can hope for her. Growing taller (which some seem to consider sacrosanct) will not help her, it will harm her. Having sexual organs and traits will never be something she understands, and can only hurt her. I think you have to really remember, really look at a 3 month old baby, remember that this is not about a mentally intact child, not about you, it's what is best for her! As she REALLY is, not as an image to project a disabled but functional child or person you have known.

3 month old baby - repeat over and over. No speech. Little coordination. No understanding of ***, no way to walk or even crawl. No way to say 'No' to a caregiver, no way to tell her parents what happened (and you bet the caregiver knows that - he'll be long gone before the parents find out what happened, too late to know who did it).

[susieq_13]

I too have a disabled daughter. She is 15 yrs old and has the mind of a one-month old baby. All due to her first set of immunizations. Unfortunately she is too big for me to take care of at home. Therefore she lives in a home for disabled and mentally retarded children. I have never thought about the "Ashley Treatment" but I would never judge the parents. What they did was their decision and I don't think any one should judge their decision. Who knows, I may have wanted that same treatment for my daughter had I been able to keep her at home. That's just my opinion.

From their own blog:
"Large breasts could %u201Csexualize%u201D Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse"

Now they did say that mom and dad were the only care givers? To include the grandparents.

This is not something that I would post in a blog, the idea that her father might abuse her because of her breasts.

I feel that they cut this little girl up so they could treat her like a barbie doll.

I lost a daughter a few years back to leukemia, and you take things once step at a time, not start hacking away at a young girl because it might excite dad.

And remember they asked for this input to see how america would react....

Just my two cents

[toolmangler-2009]

I mean no disrespect to ner but it is quite obvious that MichelleM99 has a mind to use. 'Ashley' does not. I am very sympathetic to handicapped people and their individual trials and tribulations. I am myself and have been involved with them most all of my life (67 years).
I also completelp understand the reasoning of Ashleys parents. If I had been as severly afflicted as Ashley I would want something similar done for me. (being male) I thank my God every day that I am self sufficient and can compete with the able-bodied for my life and comfort. 'nuff said'

[michellem99-2009]

I am so shocked over this.I am a disabled person.What was done to this helpless child is inhumane barbaric and a mutilation of the body.I am also shocked that Ashley's Mum has the gall to use the press for her selfish gain and put such awful site on the web is abuse of a child. No loving Mum would do this to a child entrusted in their care. I do not pity Ashley's Mum and Dad. I am an older person. I feel what was done to this baby-child should be banned.This not natural. Please respect my say here.

[prolifeg]

We are often times too quick to criticize others' actions without knowing the least little bit about what they are going through. I am blessed to have 2 healthy, beautiful boys. I could not even begin to know what I would do if I were in these parents' shoes. I do believe that they love this child. They are taking care of this child. That means something to me. In a time when people are abusing their children, these parents are doing in the picture and not doing any physical harm. I think that people should not be so quick to judge others. We never know what others are dealing with unless we walk in their shoes.

And to those who feel that the parents should have terminated this life, where are you morals? This is a human being.

[cathaleen]

It's the family's business. They know what is best.

[jetlizhan]

cudos to fannyb

[fannyb-2009]

Why are we so quick to immerse ourselves into other's lives. No one but this family really knows what's best for their child. Yes we have enormous influence over the lives of other Americans, but is this justified? But out and worry about what's going on in your own families.
My heart breaks for them and their child. Leave them alone unless you want to change the tampon of a 10 year girl....let her remain childlike. I applaud her parents. By the way when I was going through Chemo, so many people in the beginning, promised to do errands, cook and clean for me, needless to say, none of this materialized. So unless you are willing to help take of this child....but out!

[scully152]

kroemerk at 09:50 PM : Jan 07, 2007
kroemerk at 09:48 PM : Jan 07, 2007
kroemerk at 09:46 PM : Jan 07, 2007
Why did you post the same thing three times???

Ashleys' disabilities were not discovered until after she was born. And for some people to say she should have been put down (after birth), well you are not better than Dr. Kevorkian (if you don't know, look it up.)I have 3 healthy kids but one was born with a clubbed foot, nothing as bad as Ashley, but people looked at me and one guy even asked me what I did to my kid when he saw the cast my son wore (which was part of his treatment.) I have also had a misscarriage and cannot believe the people saying she should have been aborted (before birth) or put down (after birth.) Even though I would agree with the hysterectomy with the possibility of removing breast tissue I cannot condone inhibiting the growth of a child (in height) which is what Ashleys' parents did. No matter what though I wish this family the best of luck in caring for their child.

[kroemerk]

I have mixed feelings about this whole situation. I do not know what I would do in the same situation, and I pray that I never have to find out. My prayers are with Ashley's family, this process did not cure the overall problem, it just dealt with one area that COULD be controlled. Life will still be very difficult for this family.
My issue is with the people who are saying that Ashley should have been put down, that she is just a lump of tissue. I met a young girl who was not even 3 years old. Her parents were told at birth that she would not live long enough to go home from the hospital. This family decided that they had been given this blessing for a short time, and they would appreciate every day that they had with her. I did not meet this little girl until just before she passed away. I remember sitting with them in the hospital as she was dying. Their biggest concern was knowing thta she would be able to die in their arms rather than just attached to some machine. There were close to 200 people who came to her funeral and there was not a dry eye in the room. After the service, many conversations were about how this child who never walked or talked or smiled or laughed, impacted so many people in so many ways. It is not up to us to decide who is "good enough" to be worthy of life.

[kroemerk]

I have mixed feelings about this whole situation. I do not know what I would do in the same situation, and I pray that I never have to find out. My prayers are with Ashley's family, this process did not cure the overall problem, it just dealt with one area that COULD be controlled. Life will still be very difficult for this family.
My issue is with the people who are saying that Ashley should have been put down, that she is just a lump of tissue. I met a young girl who was not even 3 years old. Her parents were told at birth that she would not live long enough to go home from the hospital. This family decided that they had been given this blessing for a short time, and they would appreciate every day that they had with her. I did not meet this little girl until just before she passed away. I remember sitting with them in the hospital as she was dying. Their biggest concern was knowing thta she would be able to die in their arms rather than just attached to some machine. There were close to 200 people who came to her funeral and there was not a dry eye in the room. After the service, it was common to hear conversations about how this little girl who never walked or talked or smiled or laughed, impacted so many people in so many ways. It is not up to us to decide who is "good enough" to be worthy of life.

[kroemerk]

I have mixed feelings about this whole situation. As a speech language pathologist, I can understand the heartbreak and the strain of trying to determine what is best for your child. I do not know what I would do in the same situation, and I pray that I never have to find out. My prayers are with Ashley's family, this process did not cure the overall problem, it just dealt with one area that COULD be controlled. Life will still be very difficult for this family.
My issue is with the people who are saying that Ashley should have been put down, that she is just a lump of tissue. I recently treated a young girl who was not even 3 years old. Her parents were told at birth that she would not live long enough to go home from the hospital. This family decided that they had been given this blessing for a short time, and they would appreciate every day that they had with her. I did not meet this little girl until just before she passed away. I remember sitting with them in the hospital as she was dying. Their biggest concern was knowing thta she would be able to die in their arms rather than just attached to some machine. There were close to 200 people who came to her funeral and there was not a dry eye in the room. After the service, it was common to hear conversations about how this little girl who never walked or talked or smiled or laughed, impacted so many people in so many ways. It is not up to us to decide who is "good enough" to be worthy of life.

[kroemerk]

I have mixed feelings about this whole situation. As a speech language pathologist, I can understand the heartbreak and the strain of trying to determine what is best for your child. I do not know what I would do in the same situation, and I pray that I never have to find out. My prayers are with Ashley's family, this process did not cure the overall problem, it just dealt with one area that COULD be controlled. Life will still be very difficult for this family.
My issue is with the people who are saying that Ashley should have been put down, that she is just a lump of tissue. I recently treated a young girl who was not even 3 years old. Her parents were told at birth that she would not live long enough to go home from the hospital. This family decided that they had been given this blessing for a short time, and they would appreciate every day that they had with her. I did not meet this little girl until just before she passed away. I remember sitting with them in the hospital as she was dying. Their biggest concern was knowing thta she would be able to die in their arms rather than just attached to some machine. There were close to 200 people who came to her funeral and there was not a dry eye in the room. After the service, it was common to hear conversations about how this little girl who never walked or talked or smiled or laughed, impacted so many people in so many ways. It is not up to us to decide who is "good enough" to be worthy of life.

[antoniof123]

Sad but this happens and it will continue. We spend so much on war and death and we forget that the real war is health. I hope you are all happy with your comments but the real comment is we should be spending all this money that we waste on death doing research to help cure others. Too bad so many want to justify the wars they wage.

[catt42701]

I myself would approve of the Ashley treatment. Keeping an adult sized non-functioning person clean and active is very difficult without them having a mensus to worry about. That poor person would have the cramps and wetness of a menses every month without the understanding that goes with it. The same goes for heavy breasts. They are very uncomfortable, even painful and if you don't have them and never have you have no idea. That child adult could get pregnant and comparing a complete hysterectomy with a recovery time of a few weeks to a full term pregnancy and childbirth to a person that doesn't understand is well worth the surgery. A nonfunctioning person kept at a childs size would be easier to keep clean and easy to take on outings. Instead of being kept in bed all the time due to size she will always be able to go with them. If she grew to adult size she would have to be institutionalized sooner rather than later due to parental aging. I say keep her small and if it was a boy, do the same. It would take less but it is possible.