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Small Is Bigger
Parents say their disabled daughter will have a better quality of life by remaining small. Sam Howe Verhovek writes for the LA Times:

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.

But Ashley's parents say the move was a humane one, allowing her to receive more care, more interaction with her younger brother and sister, and more of the loving touch of parents and others who can carry her.

As a result, they say in a written account posted on the Web this week, "we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long."

Sorry, it's unusual, but isn't this the humane thing to do? Instead of shoving her in some home because only some John Lithgow-sized aide can lift her? Read the whole story before you decide.

Posted by aalkon at January 4, 2007 11:47 AM

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Interesting timing. We just had a conversation with our son's neurologist a couple of days ago about how he isn't growing at a normal rate and how that might actually be a good thing. (Since his mental development is currently that of a 2 to 3-year-old, we've been starting to worry about what we'll do if he gets so big that we can't physically control him, e.g. preventing him from running out into traffic or otherwise removing him from potentially dangerous situations.) His pediatrician had mentioned growth hormones at our last visit, but the neurologist's response was "why?"

I'm totally with the parents on this one.

Posted by: deja pseu at January 4, 2007 6:49 AM

I thought about you when I posted this. It's so easy for people who aren't in this situation to say it's wrong or horrible, but it makes a lot of sense to me, especially as the parents age.

Posted by: Amy Alkon at January 4, 2007 6:58 AM

Yes, exactly. Our neurologist also mentioned that she has no problem recommending hystorectomies/tubal ligation to parents of severely retarded girls. I'll probably lobby to get our son a vasectomy when he's older, too. (We're working on setting up a substantial Special Needs Trust to help cover his care once we're gone, and I have images of someone unscrupulous trying to use paternity to get at that money.) Not politically correct, either, but people need to walk a mile in the shoes of parents of these kids before they condemn.

Posted by: deja pseu at January 4, 2007 7:15 AM

This story was all over the BBC World news this morning and I kept hearing it in pieces.

At first I thought it was about some parents who had disfigured their child, making them shorter for some reason. Then I thought it was because they were dwarfs and wanted a child their own size so they instituted hormone treatments.

It really does help to hear the whole story, which I eventually did, because the reporters on the BBC radio show said they were flooded with emails. Once I did hear the whole story, my entire point of view changed.

The radio program announcers read from an email they'd gotten from a man whose friend cares for their severely-disabled child who is now 200 lbs -- and has to still be diaper-changed, among other things. If that child (for he will always be a child) could have been kept child-sized, the challenges could still have been managed.

I'm absolutely with the parents. Unless this procedure causes their child pain, keeping her small and manageable is actually quite practically the best solution.

Posted by: Kitt at January 4, 2007 8:57 AM

Can I get a drug to make my boyfriend small and manageable?

Posted by: Lena at January 4, 2007 2:13 PM

Yes Lena, it's called militant feminism.

Posted by: Todd Fletcher at January 4, 2007 3:07 PM

Todd, that was hilarious.

Posted by: Amy Alkon at January 4, 2007 9:13 PM

Here's another one, or is this one someone referred to earlier?

http://tinyurl.com/yyk4k6

The news story begins with shabby language:

"The mother of a severely disabled child said yesterday that she would "move heaven and earth" to get her daughter the surgery that has stopped an American girl from growing up."

I think you don't have to be too poetically minded to realize that it's not the surgeries/procedures that stop these kids from "growing up", it's the severe disabilities. They're not going to have typically challenging and fulfilling lives anyway.

We should give loving, sane parents wide latitiude in these circumstances. And before falling asleep tonight, we should take a moment to curse an uncaring God. It sucks when people, especially intrusive media types, talk as if everything could turn out OK, if only....

Posted by: Crid at January 5, 2007 10:15 PM

If journalists would conduct themselves in a more responsible manner, we wouldn't have to "read the whole story first," because it would be apparent from the first paragraph that we should be sympathetic to the parents. "Stop an American girl from growing up" is just meant to inflame our natural reaction to injustice. I read this entire story on cnn.com yesterday, and I fail to understand how anyone could begrudge the parents this step; in fact, I don't understand why there isn't oral medication that would accomplish the same objective, without the need for painful removal of the uterus and breast tissue.

Shame on anyone who wrote about this piece focusing on the "shock factor" and prevented the public from grasping the true significance of what these decent people are trying to do for their daughter.

Posted by: Tess at January 6, 2007 4:27 AM

It isn't a journalist's job to make it apparent from the first paragraph that you should be sympathetic to the parents, but to tell the story.

I hate when people say stuff like, "Journalists should conduct themselves in a more responsible manner."

Everybody should.

I wrote to read the whole piece because this did happen to be one of the times the Cliff's Notes version wasn't quite there. Because you, as a journo, are not bloggable in a couple of paragraphs doesn't mean you do bad work.

What you're talking about -- putting it all in the first para vs. a longer "tell" -- is the difference between journalism as it's been done on front pages for quite some time, and "magazine-style" writing, which papers are increasingly using, where the story is drawn out through the text. People tend to find the latter more interesting, I think.

Posted by: Amy Alkon at January 6, 2007 6:13 AM

Note that I didn't say journalists should tell us to be sympathetic, but that we WOULD be sympathetic from the get-go, if the gist of the story was clear from the start. Many of the pieces I've read about this story start with an attention-getting shocker that initially makes the parents look bad and does not turn out to be the slant of the article. THAT is my objection, because many people are too lazy/too busy to read the whole article and form their opinions based on the first paragraph or two only (or worse, just the headline!).

Reminds me of a story I saw a few months ago with the headline that went something like "Another Building Collapses in New York City." My heart skipped a few beats and I broke out in a sweat, until I read on to find out it had partically collapsed during a construction accident, not a terrorist act. Just because something is more interesting in the first paragraph doesn't mean it's responsible journalism.

PS: I wasn't including you in my criticism of journalists...I think you're one of the only consistently responsible journalists out there, which is why I read your work religiously. And I do believe I've seen you yourself criticizing unresponsible journalism, although maybe I'm not remembering correctly.

Posted by: Tess at January 7, 2007 9:18 AM

Note that I didn't say journalists should tell us to be sympathetic, but that we WOULD be sympathetic from the get-go, if the gist of the story was clear from the start.

I didn't misunderstand you - but perhaps if you care about an issue you could bother to read the whole story instead of demanding it be spoonfed to you in boring pyramid journalism style?

The fact that you or somebody else is too lazy to read the whole doesn't doesn't make for irresponsible journalism, just, well, laziness on the part of the reader.

I often get complaints that I don't just tell people what to do, that I use humor and metaphor. In my line of work the fact is, according to Stanton Peele, it's much more motivating to help people along to the conclusions in their own minds rather than spoon-feeding them. (See Motivational Interviewing -- either look it up online [if that's not too much to ask of the lazy reader!] or check it out in Stanton's book, 7 Tools To Beat Addiction), link below:

http://www.amazon.com/gp/product/1400048737?ie=UTF8&tag=advicegoddess-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=1400048737

I also describe how it works in a column I'll post soon.

P.S. Why should the point of a story be making readers sympathetic?

Posted by: Amy Alkon at January 7, 2007 9:38 AM

I was surprised by the writer's assumption that everyone would think this was awful. I thought it was wonderful, and can't see how keeping her small breaks the code of "first do no harm" for the life of me.

Posted by: rebecca at January 7, 2007 4:29 PM

Sigh. We have the technology to keep alive children who will never grow up - and here I'm thinking primarily of children such as this girl, rather than, say, Down's syndrome kids who can hold down jobs and live in group homes - but not the technology to cure them or the resources for the state to care for them well. Short of developing a Star Trek-style replicator, I don't see us being able to spare considerably more resources in the future, especially given the aging of the baby boomers. This is obviously not the ideal solution. The ideal solution would be a cure that would allow the girl's mind to develop normally. Given that that does not seem to be forthcoming, other alternatives must be considered. Good for the parents for thinking long-term.

The parents are also probably thinking about the fact that one day they will be gone, and the girl's two siblings will be in charge of her welfare, and it will be a lot harder to justify institutionalizing someone who looks like a sweet eight-year-old child than it would be someone who is adult-sized with all of the attendant issues.

One of the issues that seems to be drawing the most attention is that the parents had their daughter's nascent breasts removed (there's a family history of large breasts, which would be uncomfortable given that the girl can't sit up on her own and hates doing so assisted) and had her uterus removed to prevent issues from cramps, etc. I do understand discomfort over sterilizing "undesirables," but I really don't think that's the case here. I actually saw some posts on other message boards about how clearly the parents were uncomfortable with their daughter's sexuality, or some rubbish. Um, she has the mind of a three-month-old. I'd be highly uncomfortable if my three-month-old was viewed in a sexual way. (And, although I haven't seen any of the articles about Ashley mention this, sometimes severely retarded women are sexually abused in institutions and end up pregnant as a result. It seems that the parents are doing everything possible to keep their daughter from going into an institution, and I'm sure even if she does her family will be vigilant, but it's good that the family is acting to make this an impossibility.)

Posted by: marion at January 7, 2007 8:54 PM

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