Parents Under Fire for Making Daughter Stay Child Forever

[txsvicki]

I can see how these procedure can have some long term health benefits for the girl but I don't see the dangers of long term high dose estrogen being addressed. Estrogen therapy has just been found to cause strokes and heart attack in menopausal women. The little girl will suffer even more if she has a stroke. I gathered from the blog that the estrogen therapy was just discontinued though. I don't see the girl being kept a child but being turned into a little old woman and if she's not turned and moved every hour she can still get pressure sores. If all bedridden people were turned correctly every hour, they wouldn't get those things. I don't know if I agree with all this or not since proper care and simple medication would take care of many of the problems. The main thing that I see a benefit from is having no appendix and being lighter, but there's still many things that can happen to cause pain in the body and the girl still won't be able to tell anyone what is hurting.

 

[julianne]

I can see how these procedure can have some long term health benefits for the girl but I don't see the dangers of long term high dose estrogen being addressed. Estrogen therapy has just been found to cause strokes and heart attack in menopausal women. The little girl will suffer even more if she has a stroke. I assume that this estrogen has to be kept up for her lifetime. I don't see the girl being kept a child but being turned into a little old woman and if she's not turned and moved every hour she can still get pressure sores. If all bedridden people were turned correctly every hour, they wouldn't get those things. I don't know if I agree with all this or not since proper care and simple medication would take care of many of the problems. The main thing that I see a benefit from is having no appendix.

I see what you are saying, but I think that the parents stance is that they needed to weigh the obvious known benefits versus the possible chance of risks.
I was under the impression that the estrogen therapy isn't a lifelong thing---only until she has reached the point of not growing anymore. Maybe I read wrong. Even still, people have heart attacks and strokes without hormone therapy---so even though estrogen MAY increase the chances of such later on, it all comes back to benefits vs. risks.
I think that bedsores is at the bottom of the list in their reasoning of why they did this. Yes, proper care CAN take care of some of the issues, but I see what they have done is giving her a better chance of receiving that proper care for her life. I've worked very closely with people in nursing homes before through my hospital job, and I can tell you that "proper care" is a very static thing. I've seen horrible things happen to patients in so-called "wonderful, five-star" facilities.
I think anything that gives this little girl a better chance at having the most comfortable life possible is really the issue, and I think her parents have given her that by making the decisions they did.
I'm not sure what basis there is to NOT agree with their decision. She would never have children anyway--unless she was raped.

 

[Tristan]

Wow! I didn't know what to think at first, but after reading their blog,
I guess they are doing what's best for her.

What I found truly outrageous, is that in the 60's and 70's women took large
doses of estrogen so they wouldn't grow to be tall!! That is CRAZY!!

 

[reb]

hi taximom, i know you guys aren't all .. i was just referring to the crazy ones! really though, i respect most all viewpoints, as long as they don't hurt other people or demand that everyone follow suit.
those is definitely some tough choices you & your husband will be making.. i wish you the best in dealing with it all. my mom was young and had to deal with my brother (her first child & my only sibling) being severely retarded (although not as incapacitated as ashley), and with a bad marriage on top of it. it was very difficult and depressing and i would not wish it on anyone.

 

[angelmom]

What I found truly outrageous, is that in the 60's and 70's women took large doses of estrogen so they wouldn't grow to be tall!! That is CRAZY!!

EXACTLY!!! When I think about all the stuff people take medication for and have surgery for, how can anyone judge these parents. Women have breast reductions and enhancements all the time for all kinds of reasons. There are women with breast cancer in the family who elect for a double mastectomy before the first sign of cancer. Wonder what NG would think of that? This family has a history of breast cancer on both sides of the family! :doh:

Estrogen therapy is widely used. There was a whole article in our paper one day about how women can now use the pill to regulate their periods so they don't get it on an inconvenient day, and how swimmers are manipulating their hormones so they only get a period every few months. Why is that any better?

As for the hysterectomy, I know a lot of doctors have changed their tune, but it's not hard to find a doctor who will do it because of "bad cramps." I don't think this is a pro-life thing at all. She could never legally consent to sex, and I don't think anyone would suggest that she have a child.

Slippery slope my @$$. Do we have no brains of our own? Does the 40 member ethics committee mean nothing? The research? Anyone who criticizes should do some volunteer work in a nursing facility and then report back.

 

[mjak]

Wow, what a heartbreaking situation. I do believe the parents acted in what they believe to be the best intrest of their child. Clearly, they are loving, caring and educated parents who believe they made a decision that is best for their child. I can find no fault in thier decision making process, nor their right as her parents to make such a decision.
However, I do have some concerns about the medical ramifications of such treatment.
High dose estrogen treatments are not healthy. The risks are many, from stroke, hearttacke, cancer and many others we probably do not even kow about now. Of great concern to me is the damage done to a human body that is forced to have a bone aging so rapidly without the actual growth? What is the effect on internal organs when they are subjected to such severe hormonal imbalance? I am worried for this little girl.

-mjak

 

[Kymistry35]

Me and my hubby argued over this until about midnight. He actually agrees with NG. I normally love her but I think she really dropped the ball on this one. She was so out of line with her comments. I can see why the parents did this, if not they might would have to put her in an institution when she became to big or they became to old to handle her on their own.

 

[czechmate7]

Me and my hubby argued over this until about midnight. He actually agrees with NG. I normally love her but I think she really dropped the ball on this one. She was so out of line with her comments. I can see why the parents did this, if not they might would have to put her in an institution when she became to big or they became to old to handle her on their own.

Teon~ You need to give your hubby a good :slap: (LOL)!!!
I think it's a matter of you can't really understand until you walk in their shoes. I have a special needs child so I can relate (somewhat)....and I think it's wonderful for people who haven't experienced a handicapped child to understand where these parents are coming from..

 

[Kymistry35]

I gave him a good :slap: and a kick, LOL. He felt like they were violating her rights, even though I explained to him that she had a mind of a 3 month old and that she would never be able to make decisions for herself or live a "normal" life. He just flat out refused to believe that there was no mental capacity behind her bright smile.

 

[LovelyPigeon]

I don't know yet where I stand on this issue. I think I can see the good and the possible bad in performing these procedures in order to keep this profoundly handicapped daughter very short in stature.

We have two mentally handicapped sons, 27 and 31, that still live at home with us. They are 6'3 and 6'2 and weigh 250. They are physically normal except for seizure disorder. The oldest has been sexually active (and will be again any chance he gets) while the younger has never seemed to develop sexual interest even though he's physically developed normally. That said, our sons don't face the same problems that Ashely does because they don't require the kind of physical care necessary for her.

We do have friends who have a daughter, Alex, that sounds identical to Ashley in mental development. Alex, at 14, has grown to about 5 feet tall but probably won't grow any taller. It's true that she would be easier to handle physically if she were a smaller body.

A child/adult with the mental development of a 3-month-old wouldn't be frightened by menstrual blood anymore than by defecating and urinating. A 3-month-old would have no recognition of blood. Hysterectomy, when allowed by law (there's been a ton of controversy and prevention in the past) is done to prevent an unwanted pregnancy and to make it easier for the caregivers--a very practical decision. Peformed on a handicapped female with more mental capacity, though, is highly controversial.

If procedures like this are a good thing for profoundly handicapped persons and the persons who care for them, then that could open up entirely different ways to deal with those who are born with profound and severe disabilities both mental and physical.

There's a lot to consider and think about. I'm going to take my time as well as take some professional and clergical opinion under advisement before deciding what I think is the best, moral position.

 

[lisafremont]

I started watching NG last night and haven't read the parents' log but I heard that Ashley is in essence a 3-mo-old baby and so I have no problem at all with the parents' decisions.

I often agree with NG but last night she got on my last nerve. She kept going on about this as if Ashley had a normal mental and physical development. As if it would be desirable for this BABY to have the body of an adult female and the size as well. That's nuts!!

I support these parents and wish them well in doing their best to care for their child.

To Nancy :slap:

 

[mymeow]

I, too, am in support of Ashley's parents for making a very difficult decision regarding their daughter's future well being. I was also fooled by the media headlines into thinking this case was about some demented parents who wanted to keep an otherwise normal child small. It irks me that they chose the headlines that they did.
As a social worker in a children's hospital (I'm in NY) I've been part of ethics committee meetings for various different reasons. Given all the information presented on behalf of this child and family I would have had no problem voting for them to proceed with the surgeries. My heart goes out to all parents with special needs children.

 

[Malapoo]

I rarely watch Nancy Grace. Saw it a few times and she just rubs me the wrong way even if I might agree with her over all on the issue. She takes over the discussion to the point it isn't a discussion, just her ranting and raving and running over anyone who dares to disagree with her.

 

[bradshaw]

I did not see Nancy's show on this and from what I am reading here I am glad I did not. I believe that issues like this should be debated and all sides considered but that debate can and should be done so with respect and dignity. I am sorry Nancy could not do that.
I respect Ashley's parents decision.

 

[Details]

...I often agree with NG but last night she got on my last nerve. She kept going on about this as if Ashley had a normal mental and physical development. ...To Nancy :slap:

I've read some other forums, and that keeps seeming to happen - people are talking about Ashley as if she'll someday snap out of it, and want to have kids! No understanding or acceptance that disabled children don't live in the world of the feelgood specials, where a cure is found, and the disabled person can live in the world! Or they're just misunderstood, and secretly a Stephen Hawking or some such hiding out. Reality is not so cheerful for these children.

 

[sissy's mom]

I guess I need to read the parent's blog before I make any comments. I keep missing the story on the news and rarely watch Nancy Grace.

 

[txsvicki]

Wow, what a heartbreaking situation. I do believe the parents acted in what they believe to be the best intrest of their child. Clearly, they are loving, caring and educated parents who believe they made a decision that is best for their child. I can find no fault in thier decision making process, nor their right as her parents to make such a decision.
However, I do have some concerns about the medical ramifications of such treatment.
High dose estrogen treatments are not healthy. The risks are many, from stroke, hearttacke, cancer and many others we probably do not even kow about now. Of great concern to me is the damage done to a human body that is forced to have a bone aging so rapidly without the actual growth? What is the effect on internal organs when they are subjected to such severe hormonal imbalance? I am worried for this little girl.
-mjak

This was my major concern since the girl is expected to live a full life and also concern about the pain that was caused from the surgeries at the time even though short lived and pain medication was given. Also, if this girl does live as expected to be an older woman, will being so slight and having less hormones make her even more fragile in the hands of some caregivers who could hurt her or even accidentally break a bone? What if she gets osteoporosis or has more bony pressure points from having little padding or painful arthritis in the rib cage as some result of years and years of no padding from any breasts. My mother has a double mastectomy which was caused by hormone therapy after menopause, which she did not really need but took because she had had an unnecessary hysterectomy. She has pain and arthritis in the ribs due to the mastectomy and painful bladder problems due to lack of hormones. I did work at a place for the mentally retarded and their size was more a danger to the worker if they were large and strong but the smallest ones were the ones who fell and got hurt and would have been more at risk to being handled too roughly.
I also worry about things being given and done to normal people and those with disabilities just to test drugs. It takes the so called experts years and years to decide to tell us that something is not safe after all.

 

[southcitymom]

Report: 'Pillow angel' surgery broke law

NEW YORK (CNN) -- A hospital that performed a controversial procedure that stunted the growth and sexual development of a profoundly disabled child violated Washington state law by sterilizing her, according to an investigative report released Tuesday.


The case has raised medical ethics questions and rankled disability and feminist groups.
The Washington Protection and Advocacy System, a private group vested with federal investigative authority for people with disabilities, found that Seattle Children's Hospital and Regional Medical Center violated the constitutional and common law rights of a girl identified only as Ashley by performing a hysterectomy without a court order from the state.
"Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval," said Mark Stroh, WPAS executive director, in a statement.

More ast link


http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html

 

[Details]

Some cases are so obvious that - yeah, maybe a court should have checked off, but it really is obvious that this was the right decision for her.

 

[sherri79]

i was so torn when i read this. in this case the parents did what they felt was right for their child. i agree with them. i would not want doctors and parents to get together and decide its easier if child a b and c would be better off if we kept them from reproducing. we had that in this country at 1 time. a court that looks at it on a case by case basis would have made me feel better. if i was the parent of this child i dont know what i would have done. my heart goes out to there people. i hope this can be put behind them and they can move on with their life taking care of a child i feel they love very much.