Parents of disabled child deliberately stunted growth to keep her "manageable" size

[Laurent]

Surgery on girl raises ethical questions
By LINDSEY TANNER, AP Medical Writer
1 hour, 27 minutes ago

CHICAGO - 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.'"

http://news.yahoo.com/s/ap/20070104/...unted_daughter

[Grimmlok]

Wouldn't it have been easier just to remover her legs? not like she's using em

[Lobelia]

I was horrified at first, then thought, well hell, why not?

But then again, I'm not sure I wouldn't have done something else, long ago. Who knows.

[moomies]

wow, I can't believe doctors let this happen or even worse, had their hands in this. It sounds very wrong to me...

I sympathize with the parents that they are having a tough time and all but



I shouldn't compare humans to pets but it's like owning chihuahua for the ease of transportation (you can sneak one in to stores and what not) as opposed to having a larger dog cuz it's harder to take care of or have genetical problems or something.

[Dean James]

I get the parents' line of thought but it opens up a whole can of eugenically altered worms. I honestly don't know what I'd do in that situation but from where I'm sitting, it sounds horrifying.

And I'm sure that there are doctors out there willing to execute treatments like this. More interested in stretching the limits of science than staying within the boundaries of ethics.

[Lobelia]

I met a mom recently with a completely disabled child of about 8 years old. Mom carried this child in to see me. Mom reminded me a lot of Jada Pinkett Smith, because her arms were muscular & completely cut, obviously from carrying this child around all these years. Even when she's in a wheelchair, you've still got to get her in & out of bed, etc. The child can't use her arms at all, so she can't help.

My heart went out to this mom, and I think I could totally forgive her for doing something like the parents in the article did. It would be easier to just kill her at some point. Probably pretty easy to explain away, too.

This is one reason (of many) why I stopped at having 2 kids - you just never know what is going to happen & what you'll end up with. I was blessed with 2 healthy kids, & I had no interest in pushing my luck, & ending up spending the next 30-40 years caring for an invalid. I mean, just imagine.

[twitchy]

What about a hoist? You don't have to rely on sheer muscular strength to get someone handicapped in and out of bed/baths/wheelchair.

[Sleuth]

i have a niece who is almost ten with severe celebral palsy and epilepsy. She looks pretty small but picking her up is like lifting a dead weight. I don't think i will put anything against a parent who is doing their very best to look after disabled child as i know it can be very tough. Putting her in a home is a very real possibility that my SIL faces as looking after her is becoming increasingly difficult as her medical problems become more demanding.

ps a hoist cannot be used everywhere as not all severely disabled people are forced to be confined in a wheelchair, bed or bath.

[A*O]

There can be no worse purgatory than having to care for a severely disabled child. I had a cousin who had a whole list of physical and mental problems from birth and my aunt and uncle cared for him to the best of their ability even though his needs totally dominated their lives because he needed round the clock care. They were absolute saints. The docs said he wouldn't live beyond about 7yrs but in fact he lived until well into his 30s when his ravaged body finally gave up the fight for survival. Sadly, my uncle died only a year later and my aunt a couple of years after that, both in their early 60's. I am sure their premature deaths were partly caused by the stresses and strain of caring for their son for all those years.

[Carmina]

I totally understand their decision. It would be really, really hard to lift an average sized girl/woman around. Also, imagine how difficult it would be to deal with her menstruating and so on. It's difficult enough as it is.

[Grimmlok]

I get the parents' line of thought but it opens up a whole can of eugenically altered worms.

Well it aint like the tard is gonna be reproducing

[Sleuth]

^^ i read that as "well it ain't like the tart is gonna be reproducing" lmao!!

[piperdiva]

Originally Posted by Lobelia

I met a mom recently with a completely disabled child of about 8 years old. Mom carried this child in to see me. Mom reminded me a lot of Jada Pinkett Smith, because her arms were muscular & completely cut, obviously from carrying this child around all these years. Even when she's in a wheelchair, you've still got to get her in & out of bed, etc. The child can't use her arms at all, so she can't help.

My heart went out to this mom, and I think I could totally forgive her for doing something like the parents in the article did. It would be easier to just kill her at some point. Probably pretty easy to explain away, too.

This is one reason (of many) why I stopped at having 2 kids - you just never know what is going to happen & what you'll end up with. I was blessed with 2 healthy kids, & I had no interest in pushing my luck, & ending up spending the next 30-40 years caring for an invalid. I mean, just imagine.

wonderful post . I stopped at 2 for the same reason. I have a cousin who is trying to raise a severe autistic child. Her and her hubby are not wealthy by any means. Her whole life revolves around the child. I don't know how she does it. She is a saint, IMO.

[Grimmlok]

I dunno.. if your kid is practically braindead and a complete invalid what's the point? You're anthropomorphizing a meat sack that shits and blinks.

[Carmina]

Well it aint like the tard is gonna be reproducing

Very empathetic of you.

I saw the parents on the news and they were concerned about the kid being sexually abused and becoming pregnant, which is part of the reason they decided to remove her uterus (I think?), so it would never be a possibility. I think that's a wise decision, there are a lot of sick fucks who would like to take advantage of a disabled child.