What is best for this child ? (Poor Ashley )

[RedWine]

An American couple have had doctors stunt their disabled nine-year-old daughter's growth in the hopes of keeping her small enough to enable them to care for her.

Ashley has been diagnosed with static encephalopathy, or severe brain damage. She has the mental age of a three- to six-month old. She cannot speak, relies on a feeding tube for nourishment and cannot move on her own.

Yet the girl is an integral member of her family, who live in Washington state: Her parents say she loves Andrea Bocelli's booming voice -- they joke the singer is her boyfriend. Her parents and grandparents do everything for her and call her their "pillow angel" because she stays wherever they put her, usually on a pillow.

When Ashley started showing signs of puberty early at age six, her parents feared she would quickly grow too big for them to lift. Doctors at Children's Hospital in Seattle stunted her growth with high doses of estrogen; she finished the regimen a few weeks ago. They also removed her uterus, appendix and breast buds.

http://newsimg.bbc.co.uk/media/images/42418000/jpg/_42418803_ashley203.jpg

The girl is now 4-foot-5, weighs 65 pounds and is unlikely to get any bigger. Her family says the treatment limited her height by about 20%, or 13 inches.

The doctors call it growth attenuation therapy. Her parents, who have not disclosed their name, call it the "Ashley treatment."

The controversial case, believed to be the only one of its kind, is prompting a debate over the rights of the disabled and their caregivers. Ashley's doctors published a report on the case in a medical journal in October, prompting comparisons with the Terry Schiavo case in Florida. Critics argue Ashley's treatment made life easier for her family, but does not benefit the girl herself.

"I think we would work to treat the conditions without stripping [disabled people] of what little humanity they still have. This brings me back to when we just lobotomized them," one reader from Florida wrote on an online message board.

"I can understand a hysterectomy for her health, but more than that practically turns a human being into a doll."

This week, Ashley's parents launched a blog explaining their decision. The site also features supportive comments from other families caring for disabled children and snapshots of Ashley, blue-eyed and smiling wide.

The treatment, they say, was not a matter of convenience, but rather an attempt to help their daughter.

"Faced with Ashley's medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life," they write.

By keeping her small, they say, they can continue to push Ashley around the house in her customized stroller and bathe her in a standard-size bathtub. And it takes only one person to lift her, making it easier for her to be moved into the backyard and to social gatherings, instead of "lying down in her bed and staring at TV (or the ceiling) all day long."

The removal of her breast buds and uterus was also practical. The procedures eliminate any risk of breast cancer and menstrual cramps and make her wheelchair more comfortable (it has a chest strap). They also make it less likely Ashley would be sexually abused by a future caregiver, the parents add.

"Some question how God might view this treatment. The God we know wants Ashley to

have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains that He endowed them with) to maximize her quality of life," they write.

Some medical ethicists say the medical regimen is "probably inherently wrong."

"May we redesign disabled people to make them easier to care for?" asked Dr. Margaret Somerville, founder of McGill University's Centre for Medicine, Ethics and Law. She said people should examine their intuitive reaction to the case and question whether it is ethically justified to override that feeling.

"We've got to start from the basic presumption in favour of the natural. The 'natural' is that

she gets all opportunities to develop that anybody else would have," she explained.

"If we're going to inhibit that natural development, we've got to have very strong justification for doing that. Therefore, the question is: Is making her easier to carry a sufficient justification for that very invasive surgical intervention?"

It is also important to ask whether there are alternatives that would have met the same goals, Dr. Somerville added.

"The alternative is not to change her, but to change the circumstances in which she and her parents find themselves, and to give them human support that will enable the same things to be achieved."

Indeed, an editorial that ran alongside the report in the Archives of Pediatrics & Adolescent Medicine warned that the strategy proposed by Ashley's doctors is "highly speculative" and "ill advised."

Dr. Jeffrey Brosco, a Miami pediatrician and co-author of the editorial, asked whether it is "an attempt at a medical fix to what's really a social and political problem" -- parents like Ashley's who do not have enough access to social support and home care.

Ashley's doctors disagree. They say the potential side effects are minimal and the treatment directly benefits their young patient, regardless of whether she is cared for at home, in an institution or in foster care.

"In reality, Ashley being smaller means that she will be moved more, that she will be held more, that she will be bathed more. All of these things are inherently good for Ashley herself," Dr. Daniel Gunther, the pediatric endocrinologist who oversaw her treatment, said in an interview. The hospital's ethics committee approved the treatment.

"I understand how people have an initial visceral reaction to this that is negative," Dr. Gunther conceded. "But if people step back and really start thinking about what is best for this child and what is in her best interests, I think many people will come to the conclusion that this is a relatively low-risk procedure with a great deal of benefit for the child."

He added the debate has reminded him of a quote from Isaac Asimov: "Never let your sense of morals get in the way of doing what's right."

[RedWine]

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,” since she stays right where they place her, usually on a pillow.

Her parents say they feared 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. So they decided to keep her small.

In a highly unusual case that is stirring deep 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 past few years designed to stunt her growth radically.

The treatment, known as “growth attenuation,” is expected to keep Ashley’s height at about 4 foot 5, and her weight at about 75 pounds for the rest of her life. Had she not been given the treatment, doctors estimate, she would have attained roughly average height and weight for a woman – 5-6 and about 125 pounds.

The radical solution has drawn plenty of criticism and even outrage from doctors and caregivers, who say it is a fundamental violation of a person’s dignity to impose impairment of his or her growth. Some say it’s also a violation of the medical oath: First Do No Harm.

http://www.thenewstribune.com/images/unisys-images/20070105-images/NWS0105_ASHLEY_P.JPG

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 still carry her.

As a result, they say in a written account posted this week on the Web, “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.”

The girl’s treatment has involved a hysterectomy, surgery to remove her breast buds, and subsequent high doses of estrogen.

High-dose estrogen was used occasionally in the 1950s and 1960s, mostly on teen girls whose parents were concerned about the stigma of being too tall. The drugs could stop a 5-9 girl from becoming, say, 6 feet tall.

As that stigma has gone out of fashion, so has the treatment, medical ethicists say.

But Ashley’s case involves an entirely separate ethical realm: whether a severely disabled person’s life might be improved by having his or her growth impaired.

Publication of the case in a national pediatric journal in October set off criticism of the parents’ decision – “eugenics,” “slippery slope,” “Frankenstein-esque,” and “despicable” are some of the printable contributions to Web sites on the topic.

But it wasn’t until 11 p.m. on New Year’s Day that Ashley’s parents finally told their side.

That was when Ashley’s father hit the send button on an e-mail and began entering chat rooms with a link to their story.

The father had declined all media requests for an interview.

“I cannot explain something this complicated in an interview,” he said by telephone Tuesday.

But, he added: “People think it must have been a horribly difficult decision” to have the treatment performed. “It really wasn’t.”

The parents have not identified themselves publicly, and, in family photos of Ashley with her siblings, who are not disabled, they have a dark box on the faces of the siblings, but not on Ashley.

Medical experts could not say for certain whether the case was unprecedented, but they did say the radical treatment to inhibit growth of a profoundly disabled person had never been discussed – and debated – in mainstream medical journals before.

Daniel Gunther, the Seattle pediatric endocrinologist who has overseen Ashley’s treatment at Seattle Children’s Hospital and Regional Medical Center, said the approach was a humane alternative parents like Ashley’s could find in the best interest of the child.

Dr. Douglas Diekema, an ethicist at Children’s Hospital, 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 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.’”

[mahsaak]

elahi bemiram, che chizayee adam mibine, ghadre salamatimoono bedoonim, ina baese peyda kardane khodemoonan, enshala shafa peyda kone, va khanevadasho gharghe shady kone,

cheghade afsorde shodam!!!!

[RedWine]

Washington, D.C. (AHN) - The international medical community, and hundreds of thousands of people across the world are debating the ethics and morality behind one family's decision to retard the physical growth of a young girl with a mental disorder.

Known as Ashley X, for privacy, the girl suffers from static encephalopathy, which will keep her mind at the same level as a three-month-old baby; unable to do even some of the most basic of functions like holding one's head up, or speaking.

A pair doctors at Seattle Children's Hospital, Daniel Gunther and Douglas Diekema, devised a plan to keep the girl from "growing older," by removing her uterus, appendix and still-forming breasts, then administering estrogen to further stunt her growth.

The decision was made to help keep Ashley a child, and make her care easier on her parents. According to her parents, in an anonymous message posted on the internet, "Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings ... instead of lying down in her bed staring at TV all day long."

According to the Times Online, the case was approved by the hospital's ethics committee in 2004, which agreed that because Ashley could never reproduce voluntarily she was not being subjected to forced sterilization. However, the case of Ashley X was not made public, and, as a result, no legal challenges were ever made.

[Parinaz_M]

akhey, elahi
but i do agree that what her parents did was to make life easier for themselves, but they are the ones that have to take care of her.