Parents defend decision to keep disabled girl small

LA Times ^ | January 3, 2007 | Sam Howe Verhovek

[Lorianne]

SEATTLE — This is about Ashley's dignity. Everybody examining her case seems to agree at least about that.

Ashley is a 9-year-old girl who has static encephalopathy, a severe brain impairment. She cannot walk or talk. She cannot keep her head up, roll over or sit up by herself. She is fed with a tube. Her parents call her "Pillow Angel" because she stays right where they place her, usually on a pillow.

Her parents say they feared that their angel would become too big one day — too big to lift, too big to move, too big to take along on a family outing.

And so they decided to keep her small.

In a highly unusual case that is stirring ethical debate in the medical community and elsewhere, doctors at Seattle Children's Hospital and the parents involved are describing how Ashley has received treatment over the last few years designed to stunt her growth.

The treatment, known as "growth attenuation," is expected to keep Ashley's height at about 4 feet 5 and her weight at about 75 pounds for the rest of her life. Doctors expect her to have a normal lifespan. Had she not been given the treatment, doctors estimate, she would have grown into a woman of average height and weight — about 5 feet 6 and 125 pounds.

The parents' decision has drawn criticism and even outrage from some doctors and caregivers, who say such treatment is a violation of a person's dignity. Some say it's also a violation of the medical oath: First do no harm.

[Theo]

"Convenience"? Did you read the article? It's about love, not convenience. Who's the sick one here, wanting the State to care for this girl rather than her parents?

[r9etb]

And what was the first questionable decision? We're all dying to know.

Oh, I think we all suspect that he thinks their first "bad decision" was in letting her live at all.

[xsmommy]

you've made so many poorly capitalized and hyperventilating posts

oh i see, it's because i won't join you in the ad hominem that you are so frustrated. it's ok. maybe you will get a crack at me on another thread where i am actually interested in debating the subject matter, rather than defending the need for civil discourse from both sides. sorry, i won't play with you on this one.

[Hildy]

I didn't get that...since they didn't know about her disability until after she was born...what is psycho_bunny saying? They should have killed her? Shouldn't have agreed to a feeding tube? What?

[VRWCmember]

Whatever...she brought the HITLER into it to provoke and emotion...

When she asked the questions regarding limits of "where would hitler place them?" and "where would the Pope place them?" the only reaonable interpretation within the context would be two opposite ends of a spectrum with regard to medical ethics and respect for life. There was nothing to even remotely suggest that the actions of these parents would fall near hitler's end of the spectrum. Yet you characterized her post as "Comparing loving parents who want the best for their child to Hitler" and called it "despicable" and "the last refuge for someone without an argument." Regarding levels of refuge for someone without an argument, where do you place mischaracterizing the statements of someone with whom you disagree?

[Hildy]

She knew what she was doing. I know what she was doing. It seems you don't. Too bad.

[Psycho_Bunny]

I'll answer you some time that you appear to be capable of having a civil conversation.

[Hildy]

hit and run. Not surprising.

[VRWCmember]

Let's see, in addition to the refuge of mischaracterizing the statements of those with whom you disagree, you also appear to favor the refuge of claiming special knowledge of the thoughts and intents of a writer that contradict to the plain and clear meaning of the actual words written. If you have any judicial experience you seem to have one of the qualities that hillary will be looking for when it comes to appointments to the federal courts of appeals.

[Hildy]

WOW...Hitler AND Hillary inserted into this discussion. Keep going.

[georgiagirl_pam]

Dear KTD,
My response was to nmh and the vehement reaction that he/she (I don't know if nmh is a man or a women, sorry) has had to this story. In one of his/her comments, he/she said that "If God wanted this child small, she would be small".
In my emotional response to that comment I took it to mean that because God allowed it, nothing should be done to alter it. In other words, God allowed my son to be born with brain damage, epilepsy, etc. and my son's surgeries, devices and medications were "altering" God's sovereignty and therefore I am "playing God". My question about his/her medication was taking that to the extreme in an emotional way. Quite frankly I am shocked by the ugliness on this thread. I am not sure what else there is to say.

[r9etb]

oh i see, it's because i won't join you in the ad hominem that you are so frustrated.

No, it's because your posts are so aggressive, and yet so empty of actual content. One cannot help but wonder at the source of so much energy expended in the service of ... pretty much nothing.

sorry, i won't play with you on this one.

Cripes ... you'd be like the kid who takes his ball and goes home, except that you go one better, and never go to the park in the first place.

[r9etb]

I'll answer you some time that you appear to be capable of having a civil conversation.

Well, answer me, then -- I'm fully capable and willing to have a civil discussion....

[xsmommy]

since you don't appear to comprehend the points i have made on this thread, i suggest you just skip over my posts. it won't hurt my feelings, honest.

[Sloth]

I'm not going to second-guess the parents' decision on this.

[r9etb]

since you don't appear to comprehend the points i have made on this thread, i suggest you just skip over my posts.

Your posts are like Bob Seeger's discography ... the same song, time and time again.

I will be skipping your posts from now on -- they became pointless after the first one.

[xsmommy]

i know it will disappoint you, but it won't hurt my feelings.

[theanonymouslurker]

While you and your son's situation may give you insights regarding convenience and treatment for children with disabilities, this thread also deals in part with the security and civil liberties of disabled people. Should I dismiss your reasoning because you are (presumably) not a lawyer? Of course not, that would be silly. Your opinion would be "worth reading" no matter if you were Justice Scalia or Joe Schmoe the plumber, so long as your opinion was based upon reasonableness and objectivity.

I am sorry about your son's condition and may God bless you and your family.

[SZonian]

Naj, Hildy,

I agree with your sentiments. For the rest of those comparing the parents to mengele, et al, it is not for any of us here to judge.

A truly sad, crushing and difficult time for the family. I can only imagine what folks are saying to their face. It appears they made their decision with carefully thought out input and much care. The family made the decision that they believe was best for them and them only.

They are the ones who have to carry the burden of the child and their decision. Are any here volunteering to step up and assist this family with the care of this child? No. Only vilification of their decision.

If, IF, in God's eyes they were wrong, they will be judged accordingly.

I haven't had to experience the multitude of scenarios posed and mentioned here, so I am not going to say one way or the other whether the decision is right or wrong.

The family made a familial decision. It's their business, the rest should just butt the hell out.

Flame away! I'll read but not respond as I've read all I need to see what the responses will be.

SZ

[mfreddy]

No but you should factor my lack of knowledge in the area of law in your evaluation. Don't get stuck on the issue of convenience. This is about quality of life. This will be an interesting case to follow regarding the civil liberty angle. I would not hesitate to argue that this harms the child in no way and furthermore, enhances the quality of life and the family's ability to care for their child.

My son will be 3 in February. My wife is already having back problems and has had to retire to take care of him. From the shallow look I've had at this, I'd say my son is quite a bit more severe (20-30 seizures an hour) with CP being one of minor diagnosis. I don't think this is a road we'd go down but I fully understand the situation these people are in. My son is at constant risk of aspiration, and my wife and I have slept at different times in different beds for the last year and a half in case he needs us. At some point we will need the assistance of a nurse and hopefully will have the resources to do it.

One of the things that is not emphasized enough is that these people are doing anything they can to keep their child where they belong--at home. The easy way out would be an institution where they are not only a burden to the state, but their quality of life sucks. These kids are reactive to their environment and the parents are doing what they can to make it as comfortable as possible.

It all depends on your perspective I guess. I don't see this as a slippery slope, but rather entirely done for the welfare of the family including the child. If I did not have a handicapped son, I might see it different. The slippery slope as I see it is embryonic stem cells. You'd think I'd be for it because of the potential benefits that could be realized in time to affect my son but I'm not. I won't get into all the hyperbole but just say I'm a Christian and it's against my beliefs. I live in MO and we just went through all that.

Thanks for the kind words and God's blessing. My son's name is Aaron.