Surgery to Stunt Girl's Growth Sparks Debate

[indra]

CHICAGO (Jan. 4) - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.

The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.

University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."

Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.

"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."

The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.

Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.

An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.

She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.

"Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote.

Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.

"Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said.

Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.

"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time."'

So what do you think of this?

I can certainly see the benefits -- no periods, no chance of breast cancer (which apparently runs in the family), smaller size is easier to manage for her parents/caretakers -- and yet it makes me a bit queasy too. I can certainly see parents wanting to make sure they are able to care for their profoundly disabled child as they grow older because institutionalising is a wrenching choice as well.

I know people in the (institutionalisation) biz and many of the tales they tell are harrowing. I tend to feel if by doing this type of surgery and treatment can prevent or at least delay (for a significant time) such institutionalisation and keep the child with their loving and caring family it's benefit outweighs the drawbacks. And yet I'm still uncomfortable with it.

[MrsSpringsteen]

Oops, sorry-I was posting mine before I ever read yours. Maybe a mod can delete mine.

And I agree with what you said about the choices the parents are making so that they can care for her. One the one hand I trust that they only have her best interests at heart, on the other hand it is an uncomfortable thing. You wonder what it could possibly lead to, I remember that story last year about parents treating shortness in their (non disabled) kids as a disease.

Someone posted this in another discussion I was reading about this topic

Until there are real and consistent support systems for all parents of such children, I can't begin to judge the decisions they make.

That certainly is one thing I don't want to do, put myself in the position of judging a parent of any disabled child. I can't even begin to imagine what it's like.

[indra]

They were posted at exactly the same time!

[verte76]

I approve of what these parents are doing. They are trying to give their child some normalcy in her life, something that can make her part of the family. I'm handicapped myself and the whole thing is hard. If you can make it any easier, do it.

[jimmmm]

This report was on the BBC news the other night, the parents seem to be totally loving & caring of the poor child, so if they've chosen that as the best way forward, who am I to disagree.

[CTU2fan]

Agreed with Indra, I can see why etc but it does make me a bit uncomfortable.

[Liesje]

I guess it's OK as long as the docs completely understand what they are doing. The hormone thing is what worries me most, but as long as they are in control and can all but guarantee no surprise complications, I suppose it's for the best.

I have heard of girls having mastectomies because of breast cancer scares. I saw a girl on TV who had all of her breast tissue removed at age 17 because every female on either side had breast cancer. Since she didn't want to be breast-less, she had synthetic implants put in, but apparently you can elect to have these things done.

If there's no hope for the child to improve mentally and developmentally, then I suppose removing her reproductive organs will spare her much discomfort and additional health threats, as long as the surgeries are safe. If she's only developed to infancy, there's no point in trying to treat her like an adult. It's not fair to her and not her fault that she can't understand what would happen to her own body.

[deep]

I think it is none of our business.

[redhotswami]

Originally posted by deep
I think it is none of our business.

I'm not in the family, I don't know what the child's needs and parents' needs are.

[Canadiens1131]

Originally posted by verte76
I approve of what these parents are doing. They are trying to give their child some normalcy in her life, something that can make her part of the family. I'm handicapped myself and the whole thing is hard. If you can make it any easier, do it.

How is removing her sexual organs, breasts, or ability to age physically even remotely close to some normalcy?

I can't imagine the effort needed to take care of a handicapped child but after thinking about this story for more than five minutes, I'm genuinely, absolutely disgusted at her parents.

What kind of fucking precedent does this set? My god, that's the truly disturbing part. What kind of precedent does this set for future cases involving a child similarly handicapped, or even less handicapped?

[anitram]

This is a US case and I'm not really sure how consent laws re: medical decisions work there. I think in Canada, it might be a bit iffy, because in the absence of the girl being able to express informed consent (clearly she lacks the capacity), her parents can consent for all these treatments but only so long as they are in her best interest.

I am not particularly convinced that all of this elective surgery (some of it serious and intrusive) is in the best interest of the child so much as it is in the best interest of the parents.

Kind of a grey area.

[redhotswami]

Originally posted by Canadiens1160
How is removing her sexual organs, breasts, or ability to age physically even remotely close to some normalcy?

I can't imagine the effort needed to take care of a handicapped child but after thinking about this story for more than five minutes, I'm genuinely, absolutely disgusted at her parents.

What kind of fucking precedent does this set? My god, that's the truly disturbing part. What kind of precedent does this set for future cases involving a child similarly handicapped, or even less handicapped?

I don't think this is trying to achieve normalcy, I think the parents were trying to better manage their child. I think this has more to do with helping them out than it is helping Ashley.

I agree with you, personally I do find it absurd and disgusting. But I don't know the family, I don't know what all was involved in taking care of their child.

I know this may be a naive way of thinking, but I honestly prefer this over the parents simply doing away with their child. Either neglecting, not giving proper treatment, giving up for adoption, or even being left to die. Quite a few children born with disabilities are mistreated by their parents, simply because they are afraid and have no idea what to do.

They do love their daughter, and given their limitations and hers, they wanted to do the best they could to continue to nurture her in their loving home.

I'm sure this wasn't considered without consultation. Ashley has some significant developmental disabilities. When speaking of setting a precedent...how about turning the attention to social services? Perhaps she has some needs that could not be met? I know that the ADA and the Rehab Act really only goes so far to protect Americans with Disabilities, but there are often situations I've come across where we simply didn't have the resources that our students needed. But I can't say for sure with Ashley's family, I haven't really kept up with this story myself.

I really don't know. Like I said, I don't agree with it, but it is the family's decision. I probably wouldn't have made the same choice, but I suppose it really isn't my place, since I am not in their situation.

[Liesje]

Originally posted by Canadiens1160
How is removing her sexual organs, breasts, or ability to age physically even remotely close to some normalcy?

It really depends on the person, but I can't imagine how it would be more normal for someone with the mental capacity of a toddler to have to experience "grown up" things like yeast infections, gyn exams, having periods every month (most likely involving very painful cramping, migraines, mood swings/depression, bleeding that she would never understand or be able to take care of on her own), and the additional threat of health problems like breast cancer, any type of reproductive cancer or cysts, etc.

As an adult woman, I can manage these things because 1) I understand them and basic hygiene is not an issue and 2) my sexuality and ability to reproduce is important to my life. This girl will never be able to understand these things, never enjoy the good things about having breasts and a uterus, and never be competent enough to practice proper hygiene.

I don't have a problem with the motive, but like anitram said, these are pretty drastic and invasive surgeries that could be very risky for her. But I'm not a medical professional so I can't say whether the purpose for doing it outweighs the risks of possible complications.

I guess I don't see how this is so much different than kids who ARE mentally fine but have physical disabilities so their parents subject them to painful surgeries and devices that crank their arms and legs longer, etc, so that they can be more "normal".

[JCOSTER]

It sounds crazy at first, but you can't judge parents who are in that type of situation with their child. I couldn't even begin to imagine it. It is one of parents worst nightmares.

[CTU2fan]

Originally posted by deep
I think it is none of our business.

I agree, but apparently they didn't as they decided to blog it to the world.

[fly so high!]

Originally posted by verte76
I approve of what these parents are doing. They are trying to give their child some normalcy in her life, something that can make her part of the family. I'm handicapped myself and the whole thing is hard. If you can make it any easier, do it.

I totally disagree!...........They made these changes to put some normalcy in their own lives, NOT the childs!

[fly so high!]

Originally posted by Canadiens1160
How is removing her sexual organs, breasts, or ability to age physically even remotely close to some normalcy?

I can't imagine the effort needed to take care of a handicapped child but after thinking about this story for more than five minutes, I'm genuinely, absolutely disgusted at her parents.

What kind of fucking precedent does this set? My god, that's the truly disturbing part. What kind of precedent does this set for future cases involving a child similarly handicapped, or even less handicapped?

Totally,totally agree with you,what more can i say......... except that more help is needed for people in their situation ,they should not have to feel they need to take these sort of measures in the first place, governments and society should not sweep the diabled and impaired under the carpet !!!!

[MrsSpringsteen]

Obviously not the same situations, and I don't want this to turn into another thread about her-but how come nobody seemed to say that Terri Schiavo was nobody's business, on both sides of the issue?

Aren't they both situations revolving around questions about ethics and quality of life and caregiving ? Again, I'm not saying they are comparable in other aspects.

[Liesje]

Originally posted by MrsSpringsteen
Obviously not the same situations, and I don't want this to turn into another thread about her-but how come nobody seemed to say that Terri Schiavo was nobody's business, on both sides of the issue?

Aren't they both situations revolving around questions about ethics and quality of life and caregiving ? Again, I'm not saying they are comparable in other aspects.

No, the Terri Shiavo case was never like that, at least not in the legal sense. For the media, yes, but her case was who had the right to make that decision, the husband or the parents. That's really the only thing the courts should have been concerned with. In that sense, I always felt it WAS nobody's business but her husband's, her parent's, the court, and their lawyers. The media was where it got twisted into this whole life/death debate and whatnot. I bet there's a dozen Terri Shiavo's every day. I mean, we had to make the same call with my grandpa and he was never in the news. What originally made her case special was that her parents were contesting the husband's right to make decisions as her next of kin.

I don't really know how to feel in the case of this child. I don't know enough about medicine or caring for the disabled to make any sort of informed opinion. To me, the surgeries seem really drastic, painful, and invasive, but I don't understand enough about her condition or her family's health history to start saying her parents are evil. This child can't even sit and has the brain of a baby. I can't imagine what it's like caring for someone like that, so I think it's quite rude to be passing judgment.

[verte76]

OK, they did it to put some normalcy in their lives--as parents. But this child is never going to have an adult life, and taking out her uterus and breasts is going to make it easier for them to manage her. As a handicapped person myself, I understand that this stuff is not an individual case, it is a family case. You have to make things manageable for the parents. That's an issue that must be addressed. I'm sorry, I have to disagree with you about the rightness of this surgery. I think it's completely justifiable.