Surgery to stunt girl's growth raises ethical questions

[one...two...tree 2,762]

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://www.azcentral.com/news/articles/0104stunted-ON.html

[MichelleandCraig 1]

I've been reading this, too, and really don't know what to make of it. Doesn't seem like the child would ever have a normal life anyway, but still seems a bit odd to do all that...I'm sure the parents do haveher best interest at heart, but I dunno.....really controversial from what I've read, that's for sure. M.

[heishe 2]

Seems quite reasonable to me.

[one...two...tree 2,762]

I've been reading this, too, and really don't know what to make of it. Doesn't seem like the child would ever have a normal life anyway, but still seems a bit odd to do all that...I'm sure the parents do haveher best interest at heart, but I dunno.....really controversial from what I've read, that's for sure. M.

Yeah, I'm torn as well. I just thank God I've never had to face such a challenge as a parent.

[Alex+R 0]

My first reaction was that this strikes me as horribly wrong. But--she is nearly a vegetable, according to her parents. I think it will ultimately be best for the kid.

[one...two...tree 2,762]

My first reaction was that this strikes me as horribly wrong. But--she is nearly a vegetable, according to her parents. I think it will ultimately be best for the kid.

When I read the part of removing her uterus and breast tissue...it sounded like mutilation. What a terrible dilemna for her parents.

[MichelleandCraig 1]

I've had those same thoughts, Steven and Alex, but if she truly has no hope for any different life, maybe it will be best for her in the long run, not to have to deal with those things. I don't know. How truly sad though. M.

[Ban Hammer 13,345]

My first reaction was that this strikes me as horribly wrong. But--she is nearly a vegetable, according to her parents. I think it will ultimately be best for the kid.

When I read the part of removing her uterus and breast tissue...it sounded like mutilation. What a terrible dilemna for her parents.

i'm in full agreement with you there.

[Trumplestiltskin 5,791]

Not having had to deal with the day to day care of brain damaged child, its difficult to imagine being faced with this sort of a decision. Its certainly very easy to judge, rather more difficult to be vicarious about it.

[Hornet 2]

I saw on the news tonight they said they removed her uterus becoz she was at risk to develope uterine cancer.

This is gonna get the attention of the Terri Schiavo wackos, watch. It's easy for them to criticize becoz it's not their whole day and life spent caring for this kid.

She's a vegetable. Let her parents decide what's best, even if that's letting her die.

Until you're in that situation, some people have no clue how hard that is.

My 2nd son died at 4 days old. We took him off life support, a ventilator. He probably could have survived being born premmy 7 months but he had severe brain damage. Similar to this girl and he also was blind and would have had seizures.

It was at Tripler Army Hospital in Hawaii and I don't second guess my decision ever.

It was the best thing. I couldn't have given my 2 other sons the life they have if I was caring for their brother full time.

Just cause a person's body is alive doesn't make it a life.

I'd want to die. Watch the video 'One' by Metallica. from the movie 'Johnny get your gun'

[Trumplestiltskin 5,791]

Well lets hope that the "fundies" don't start harrassing the family for it, like they did with Terry Schiavo.

[sarah and hicham 3]

Someone quite close to me has a younger sibling who can't walk, can barely eat by herself, can't lift herself, has to wear diapers etc. The family is constantly struggling to lift her and move her into her wheel chair or into the car to take rides. Because she is bed ridden she is pretty plump and that makes it really hard to move her around.

I can understand why the family would do this- when she gets older and if she was going to continue to grow they wouldn't be able to take care of her properly.

That's that.

[mRx 16]

Well lets hope that the "fundies" don't start harrassing the family for it, like they did with Terry Schiavo.

agreed!

[Fandango 1,439]

Well lets hope that the "fundies" don't start harrassing the family for it, like they did with Terry Schiavo.

Yes, let's sum up the gov't sanctioned starvation of a brain damaged woman purely as a 'fundie' agenda. If you think about it...take her off the feeding tube...fine...then prevent her from trying to eat or drink anything where she lingers for days slowly dying of dehydration and starvation? Having a deputy by your bed to make sure your parents don't put a juice-soaked rag up to your lips so that you're more comfortable? Not cool.

Regardless how you feel about right to die or not (and I actually believe in the right to die in some instances)...no one...and I mean NO ONE deserved that. Saddam is getting pity for 2 minutes....this woman was tortured for weeks & if you did that to a death row inmate who killed hundreds of ppl...it'd be 'inhumane'

So with all due respect, please see the bigger pic where Terri was concerned and stop making it another cog in the 'I hate conservatives and here's why' routine.

wasn't sure what to do with this story until I got here

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.

http://www.azcentral.com/news/articles/0104stunted-ON.html

Then I thought that there was much merit to it.

[Trumplestiltskin 5,791]

Well lets hope that the "fundies" don't start harrassing the family for it, like they did with Terry Schiavo.

Yes, let's sum up the gov't sanctioned starvation of a brain damaged woman purely as a 'fundie' agenda. If you think about it...take her off the feeding tube...fine...then prevent her from trying to eat or drink anything where she lingers for days slowly dying of dehydration and starvation? Having a deputy by your bed to make sure your parents don't put a juice-soaked rag up to your lips so that you're more comfortable? Not cool.

Regardless how you feel about right to die or not (and I actually believe in the right to die in some instances)...no one...and I mean NO ONE deserved that. Saddam is getting pity for 2 minutes....this woman was tortured for weeks & if you did that to a death row inmate who killed hundreds of ppl...it'd be 'inhumane'

So with all due respect, please see the bigger pic where Terri was concerned and stop making it another cog in the 'I hate conservatives and here's why' routine.

There were several angles to that story - not least that it was the ultimately the decision of the courts (as opposed to the executive branch of State and Federal government) who ruled on the case for several years before the story actually hit the headlines (i.e. after it was announced that the feeding tube was to be removed) - with, I might add, the expert testimony of medical professionals.

It's interesting that a person can go from being iredeemably brain-damaged (after years of expert diagnosis and observation on the part of medical personnel - which again were a big part of the court's decision) to possibly being "awake and aware" within the span of a couple of news headlines.

Let's be clear here - christian fundamentalists (however you choose to define the term) did harrass Terri's husband (not helped by the media who characterized the guy as a cynical golddigger) - dying flowers were laid on his lawn, and he and his new wife were verbally abused on several occasions. Dozens of people set up camp in front of the hospital - praying, crying and tearing their hair with the usual tedious televangelist zeal.

The political furore over it was a red herring and a typical example of government grandstanding - though in this case there was a specific constitutional issue that made the government's actions in the case particularly contemptible. Not least that had Jeb Bush gone ahead with his plan to take Terri into protective custody you would have had two branches of law enforcement facing off in the hospital with conflicting orders. Civil wars have been started for less...

So no - the story per se was not a "fundie agenda" but it was made one, by State and Federal government attempting to interfere with years of court rulings for purely political gain.

Edited January 5, 2007 by erekose