"Frozen girl" discussed on TV tonight
If my sources are right, there should be a discussion tonight on CNN's Nancy Grace show of the "frozen girl" and the ethics of her parents' choices that are recently making news. From the BBC News:
Ashley X was born with severe and permanent brain damage, called static encephalopathy.
The nine-year-old has the mental ability of a three-month-old baby and cannot walk or talk.
Her parents argue that keeping her "frozen" as a girl rather than letting her go through puberty and growing into a woman will give her a better life.
They authorised doctors to remove her uterus to prevent menstruation, to limit her breast growth through the removal of breast buds so that she would not experience discomfort when lying down, and give her doses of hormones to stop her growing taller.
Opponents have accused Ashley's parents of "Frankenstein-esque" behaviour - of maiming the child for the sake of convenience.
From the website of Ashley's parents:
The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors.
And further details on the procedures:
I plan to watch the show tonight and then discuss this further.In early 2004 when Ashley was six and a half years old, we observed signs of early puberty. In a related conversation with Ashley’s doctor, Ashley’s Mom came upon the idea of accelerating her already precocious puberty to minimize her adult height and weight. We scheduled time with Dr. Daniel F. Gunther, Associate Professor of Pediatrics in Endocrinology at Seattle’s Children’s Hospital, and discussed our options. We learned that attenuating growth is feasible through high-dose estrogen therapy. This treatment was performed on teenage girls starting in the 60’s and 70’s, when it wasn’t desirable for girls to be tall, with no negative or long-term side effects.
The fact that there is experience with administering high-dose estrogen to limit height in teen-age girls gave us the peace of mind that it was safe—no surprise side effects. Furthermore, people found justification in applying this treatment for cosmetic reasons while we were seeking a much more important purpose, as will be detailed below.
In addition to height and weight issues, we had concerns about Ashley’s menstrual cycle and its associated cramps and discomfort. We also had concerns about Ashley’s breasts developing and becoming a source of discomfort in her lying down position and while strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues that we discuss below. The estrogen treatment would hasten both the onset of the menstrual cycle and breast growth. Bleeding during the treatment would likely be very difficult to control.
It was obvious to us that we could significantly elevate Ashley’s adult quality of life by pursuing the following three goals:
1) Limiting final height using high-dose estrogen therapy.
2) Avoiding menstruation and cramps by removing the uterus (hysterectomy).
3) Limiting growth of the breasts by removing the early breast buds.
The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk.If Ashley’s appendix acts up, she would not be able to communicate the resulting pain. An inflamed appendix could rupture before we would know what was going on, causing significant complication.
29 comments:
Good...I heard about this story and thought of your blog. I'm interested to hear your thoughts about it all.
I have only a shred of understanding for Ashley's parents. Sure, maybe she'll live a little easier this way, but facing challenges is part of being human, for her and her parents. And who knows what advances will come about in her lifetime that could improve her mentally and physically, and yet she is forevermore trapped in a 9-year-old's body and sterilized, eugenics-style, simply because they didn't want her to suffer the mildness of menstruation (unlike every other woman in the world between ages 12 and 60!). Her breasts were removed for mere convenience, and her appendix was removed "just in case." This is nothing short of child abuse.
For more comments, please visit my blog post on this:
http://angrylabrat.blogspot.com/2007/01/forever-young.html
.
I'm very interested in hearing your take on this - I first heard about Ashley X today, then came over here to see if you had discussed it.
One thing (among many) that stood out to me in the parents' website:
"3- Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse."
Of all their reasons, this one struck me as particularly absurd.
"Sure, maybe she'll live a little easier this way, but facing challenges is part of being human, for her and her parents."
I cannot believe someone could make this argument with a straight face.
If we shouldn't help people avoid challenges, why do we tell our children not to stick knives into toasters? And why do we put stop signs at intersections? Surely the challenge of navigating traffic oneself is part of being human too.
Or maybe we should just help people to avoid suffering in their lives. Which is exactly what these people have done.
Hmmm, as I see it, they put a child through the unnecessary suffering of elective major surgeries, in hopes of avoiding some theoretical "problems" later (like the terrible problem of having breasts). They haven't prevented suffering for her, only guaranteed its certainty.
Her parents certainly have. I don't know if that translates to helping her.
Maybe it will make her happier, maybe it won't. We might never know. But the reasons given for these procedures certainly seem to have her needs in mind.
"She's being shielded from the inability or refusal of other people to care for her."
...And?
I don't see the problem. If she's easier to care for, then she'll receive more care. And isn't that exactly what she needs?
"And it's okay because, hell, she doesn't care, and it'll make it easier to do toileting. And her parents are happy."
So everybody wins.
You're trying to romanticize biological fact. Surgery will make her easier to care for, and thus, will mean that she will receive more care. What more can we do?
I've had Cerebral Palsy since birth. My parents were told I'd never get out of bed.
I'm a College graduate who has raised 2 children. My Father had Alzheimer's. I know what it's like to live with brain damage, and what it's like to have a loved one with brain damage. I've spent the past 2 years battling Cancer. I'm Cancer free now.
My point is nobody knows what a person with a disability can do or how long it'll take them to learn to do it. I'm living proof of that.
People force the image of what they think a life worth living is on people with disabilities. The only reason I'm here today and not in an institution is I've been able to communicate. This child can't speak for herself. If God gives us anything it stems from freedom to make choices for ourselves.
Just because her parents made a choice doesn't mean it would have been the child's choice.
You can say the Doctors know best. They were wrong in my case. How much human potential will we waste as a society if we don't realize people with brain damage can still be people, who can be more than anyone ever thought they could?
"You're arguing that it makes more sense to give this girl a hysterectomy than simply care for a woman's body."
Yes, I am. The parts of her that were removed have no value to her.
If your appendix causes you pain, you cut it out. Ashley X just has more appendices.
She could be cared for as an adult, but it is easier to care for her as a child. Her adulthood has no value, so let's remove it and make everyone that much happier.
That may be true, but if removing these organs makes her easier to care for and serve no practical purpose for Ashley X, why not remove them? Perhaps I was under the mistaken impression that it was okay to do things just because it helped people.
Great site you have here!
I wrote a long blog about this relating growing up with a sister with the same cognitive level as Ashley, minus the physical disability. I can tell you people like this are not door stops and they do have an understanding of their identity and body. And they do mature, albeit in a different way. My sister is exponentially different at 31 than she was at 9, not less disabled, just more mature in her thoughts and feelings. Having the body of any other 31 year old is important to her, I know she would be really upset to never grow up physically.
Catching up with the comments finally....
Rachel: I'd be interested in what your student is up to with disability rights on myspace. If she wants to either email me or post it, I'd like the link.
AngryLabRat: Exactly -- who knows what the future might bring for Ashley or any of us. Technology brings unimagined opportunities, and diagnoses can change or be determined inaccurate.
Malky: What Piny says. The eager characterization of Ashley by her parents as a "pillow angel" now while she's small and "grotesque" if she were to grow larger through normal biological functions is deeply disturbing. Though I don't question that they love their daughter and want the best for her, that doesn't change the fact that how they speak about her is exactly the type of infantilizing rhetoric that belittles disabled people as beings in their owright and makes them vulnerable to all the abuses that come when you refuse to acknowledge someone's full humanity.
"The eager characterization of Ashley by her parents as a "pillow angel" now while she's small and "grotesque" if she were to grow larger through normal biological functions is deeply disturbing."
There are things which dehumanize people - being called "pillow angel" is pretty low on the list. Besides, most parents have nicknames for their kids at that age.
Frankly, I don't care what their pet name is for their kid. I have a friend who is still called "Joey-poo" by his parents. Disturbing as it may be, it doesn't really change whether or not what they did was appropriate.
"that's how it's supposed to be"
Says who? Where is the book that says, 'All of mankind ought to grow as much as they can, without medical involvement!'
While we're at it, why don't we let people suffer from devastating diseases like they're 'supposed to?' And why do remove the appendix instead of letting it burst like it's 'supposed to?'
Screw what's 'supposed to' happen. Nature is a bitch, and we can do better.
"There *is* no easy answer."
If you think making this decision was easy for anyone involved, you're insane.
"The Ashley treatment is dehumanizing."
No, it isn't, and I'm astounded that you think humanity is something that can be taken away or given by simple hormones and reproductive organs. I'd like to think that my humanity is not dependent upon my puberty, thank you.
"of the amputation of "unnecessary" internal organs. Are we going to mutilate folks w/ disabilities just so their caretaker's lives are easier??"
Give me one good reason why we shouldn't remove useless organs.
"Give me one good reason why we shouldn't remove useless organs."
Because major surgery is painful, and comes with serious risks, not in theory, maybe possibly later down the line, but right now. Because organ removal is permanent, so if it turns out that the doctors and parents were wrong about the "uselessness," it cannot ever be reversed. Because people, including people with severe disabilities, shouldn't be treated like living organ banks, because that makes the rest of us who allow it nothing better than ghouls.
"Because major surgery is painful, and comes with serious risks, not in theory, maybe possibly later down the line, but right now."
A fair point. That would be a very strong argument against surgery that served no benefit whatsoever.
However, surely that risk, once properly minimized, is worth the benefit it can provide.
"Because organ removal is permanent, so if it turns out that the doctors and parents were wrong about the "uselessness," it cannot ever be reversed."
This is probably the strongest argument out there against the Ashley Treatment. To this, I simply have to repeat - these are trained medical professionals. If it was likely that Ashley's condition would improve, they would probably know. And we can't simply avoid decisions like this in the hope that we might come up with a better solution in the unforeseeable future.
"Because people, including people with severe disabilities, shouldn't be treated like living organ banks, because that makes the rest of us who allow it nothing better than ghouls."
Your first two points were so good, this is a bit of a disappointment.
Removing organs that may be harmful in the future is completely different than treating someone as an "organ bank."
Your faith in the fortune-telling, future-seeing capacity of "trained medical professionals" is touching. But definitely not borne out in my experience.
And as for the leap to "organ bank": How long until an "Ashley" has a kidney or a cornea removed ("she doesn't really need it," they'll say) and that organ is given to someone deemed more worthy of a full set of functioning organs and an intact body? The recipient will be a sibling, perhaps, and the parents will be accorded the same slack as in this case ("It's their kids, their decision, they love them and they want what's best, who are we to judge," etc etc). Next year, perhaps? A whole two years away? Or maybe it's already happened, and the family was just not interested in spreading news of their plan...so we'll never know.
"Your faith in the fortune-telling, future-seeing capacity of "trained medical professionals" is touching. But definitely not borne out in my experience."
And your faith in their idiocy is equally frustrating.
Neither of us know exactly what they did or did not do. Whether or not they performed the correct tests is a matter of speculation, and nothing more. Since I don't have any information to contradict the assertions put forward in the parent's blog, I'm not going to call them liars quite yet.
"And as for the leap to "organ bank": How long until an "Ashley" has a kidney or a cornea removed ("she doesn't really need it," they'll say) and that organ is given to someone deemed more worthy of a full set of functioning organs and an intact body?"
The leap is a fairly large one since it breaks a critical rule of the Ashley Treatment - the operation is done for the child's good. Removing organs that posed no present or future problems for Ashley X or future subjects of the Ashley Treatment is not possible under the current scenario.
The difference between surgery for the patient's good and surgery for another's good is enormous.
"The difference between surgery for the patient's good and surgery for another's good is enormous."
Exactly--and some of us think that line has already been crossed in the case at hand.
"Exactly--and some of us think that line has already been crossed in the case at hand."
How so? The original blog post addressed several ways by which the Ashley Treatment benefits Ashley X (directly and indirectly).
Erm, possibly because the implication of parental convenience? I get the impression of "stuff toy"-like thoughts--objectification--in that blog, it's fairly faint but I think I'm not the only one. I'm not one to judge considering that I'm child free and not likely to ever want having a child (being immature and knowing it) and I can't talk for the disabled, being only slightly disabled(blind without my glasses), but it feels like the way I feel about our family cat now. We used to own a disabled cat who couldn't walk and liked to snuggle. It was like a warm meowing stuffed toy and he stayed put. Our current kitten is rambunctious and tries to steal food from the table, go figure. I love our cats a lot no matter how they behave but sometimes...
Going back to Penny's comment: Because organ removal is permanent, so if it turns out that the doctors and parents were wrong about the "uselessness," it cannot ever be reversed.
And Maly's response:
This is probably the strongest argument out there against the Ashley Treatment. To this, I simply have to repeat - these are trained medical professionals. If it was likely that Ashley's condition would improve, they would probably know. And we can't simply avoid decisions like this in the hope that we might come up with a better solution in the unforeseeable future.
The problem with trained medical professionals being trusted implicitly here is that they are also fallible human beings working within an industry/field that has proved itself vulnerable to societal assumptions about the inferiority of disabled people. All the disabled people I know politicized by this event came to an awareness of this through personal experience. Some of them were designated as no more capable of independent life than Ashley. So how far do we follow these experts? Only with medical decisions for the disabled people that they seem to be absolutely undoubtedly 100% right about? Which ones are those?
"The problem with trained medical professionals being trusted implicitly here is that they are also fallible human beings working within an industry/field that has proved itself vulnerable to societal assumptions about the inferiority of disabled people."
Okay, so medical professionals aren't perfect. Nobody is. But if ANYONE is going to know what's going on here, it's going to be the people with years of training and experience.
Unless you can come up with evidence supporting some sort of conspiracy in the medical community to disenfranchise disabled people, I fail to see the issue.
"All the disabled people I know politicized by this event came to an awareness of this through personal experience."
How is that relevant? Having a greater emotional investment in an issue does not make one more knowledgeable about it.
"So how far do we follow these experts? Only with medical decisions for the disabled people that they seem to be absolutely undoubtedly 100% right about? Which ones are those?"
This should be readily apparent. We should always double-check the claims and ideas of professionals in any field. That is the only way to ensure that they adhere to to sensible rules and standards.
But there is a difference between checking up on professionals and just assuming that they aren't paying attention.
And if no one really "knows what's going on" then what? Do nothing, or do no harm, perhaps?
How is that relevant? Having a greater emotional investment in an issue does not make one more knowledgeable about it.
I wasn't referring to emotional investment, though that has been a way of discrediting the thoughts of disabled folks in many forums lately. I was referring to direct first-person experience with medical professionals underestimating a person's mental and physical ability and then making recommendations or providing medical procedures based on that misinterpretation.
This should be readily apparent.
No, actually. I'm not suggesting anyone is not paying attention. Surely we both can agree it's not so simple as that.
Yeah, the rhetorical whiplash has been stunning. A summary of about 100 online conversations I've had or seen this week:
"You'd support the parents if you were raising a child like this."
"I am raising a child very much like this. I still don't support this approach."
"Oh, well, that's because you're taking it too personally."
Convenient, no?
Very convenient. The discussion at Alas has had a lot of this in it.
Sorry for my bad english. Thank you so much for your good post. Your post helped me in my college assignment, If you can provide me more details please email me.
Really good post!
Post a Comment