Parents defend decision to stunt daughter's growth
http://www.abc.net.au/news/newsitems/200701/s1821784.htm
By North America correspondent Michael Rowland
The parents of a severely disabled nine-year-old girl in the United States are defending their decision to deliberately stunt her growth.
Ashley was born with a rare brain condition.
She cannot walk or talk and she cannot even lift her head in bed.
Three years ago her parents decided to stop her growing so, as they put it, the girl could have a better quality of life.
Ashley was given hormone treatment and had her uterus and breast buds removed.
Critics have accused the parents of maiming their child for convenience, but Douglas Diekema - one of the Seattle doctors who approved the treatment - says this was not the motivation.
"If she were smaller, it would be much easier for them to continue to provide a much more personal level of care," he said.
The parents insist they stunted their daughter's growth out of love.
Decision to stunt growth of disabled girl triggers debate AM - Friday, 5 January , 2007 08:18:00Reporter: Michael RowlandPETER CAVE: In the United States, controversy is raging over the decision by the parents of a severely disabled young girl to deliberately stunt her growth in order to give her a better life.Nine-year-old Ashley has undergone hormone treatment and a hysterectomy so, as her parents say, she'll be easier to care for.The move has triggered intense and emotional debate, with critics accusing the parents of maiming their child for the sake of convenience.North America Correspondent Michael Rowland reports.MICHAEL ROWLAND: Her parents call her their pillow angel.Nine-year-old Ashley was born with a rare brain impairment. She can't walk or talk, and she's fed through a tube. She has the mental ability of a three-month-old baby.Three years ago Ashley began to show early signs of puberty, and her parents became concerned about the impact of her rapidly increasing height and weight on the girl's quality of life.So they decided to keep her small.After consulting doctors at a Seattle children's hospital, Ashley's parents say they agreed on a range of procedures aimed at stunting the girl's growth.This was done by giving Ashley high doses of oestrogen. She also underwent surgery to stop her breasts growing. As well, Ashley's uterus was removed.As a result Ashley's growth has been suspended at just below one-and-a-half metres. She'll weigh no more than 34 kilograms.Her parents haven't given their names, but they've set up a blog to defend what they've done.Alongside a gallery of photographs of Ashley, the parents say her breast buds were removed so she wouldn't be uncomfortable when lying down.Her uterus was taken out, the parents say, to stop the discomfort associated with the menstrual cycle and to stop Ashley getting pregnant if she was sexually abused.DOUGLAS DIEKEMA: She'll always have the mental age of an infant, and in some ways it may be more appropriate that she has a smaller body, because it fits her mental age more appropriately.MICHAEL ROWLAND: Doctor Douglas Diekema, from the University of Washington in Seattle, was on the ethics panel that gave the go-ahead for Ashley's treatment.DOUGLAS DIEKEMA: At the present time, dad is frequently the one that lifts her from one place to the other, so as she gets bigger that becomes much more difficult, it becomes, as they become older it becomes more difficult, and at that point in time they would be forced to consider using a mechanical lift, which is much more impersonal.MICHAEL ROWLAND: Ashley's treatment has triggered a storm of controversy in the US.While some other parents of disabled children have praised the decision, there's been an outpouring of disgust over what's been done to the young girl.The parents have been accused of creating a 21st century Frankenstein's monster, of maiming their child for the sake of convenience.Andy Imparato is the Chief Executive of the American Association of People with Disabilities.ANDY IMPARATO: To remove a child's uterus on the grounds that she doesn't have the mental capacity to know how to use it is child abuse.MICHAEL ROWLAND: In response, Ashley's parents have used their blog to insist it's all been done in the girl's best interests.Ashley, they write, can continue to delight in being held in our arms and will have more exposure to social gatherings, instead of lying down in her bed staring at the TV all day.And they've told their critics that unless they're living the experience, they have no clue what it's like to be the bedridden child or her carers.In Washington, this is Michael Rowland reporting for AM. ,_._,___ Father tells: why I froze my little girl in timea.. Chris Ayres, Los Angeles b.. January 05, 2007 HER name is Ashley X, and she is a little girl who will never grow up.Until New Year's Day, not even her first name was known. Ashley was a faceless case study, cited in a paper by two doctors at Seattle Children's Hospital as they outlined a treatment so radical it brought allegations of eugenics, of creating a 21st-century Frankenstein's monster, of maiming a child for the sake of convenience. The reason for the controversy is this: three years ago, when Ashley began to display early signs of puberty, her parents told doctors to remove her uterus, appendix and still-forming breasts, then treat her with high doses of oestrogen to stunt her growth. In other words, Ashley was sterilised and frozen in time, for ever to remain a child. She was 6. Ashley, daughter of two professionals in the Seattle area, never had much hope of a normal life. Afflicted with a severe brain impairment known as static encephalopathy, she cannot walk, talk, keep her head up in bed or even swallow food. Her parents argued that keeping her small was the best way to improve the quality of her life, not to make life more convenient for them. Because of her small size, the parents say, Ashley will receive more care from people who will be able to carry her: "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." By remaining a child, they say, Ashley will have a better chance of avoiding everything from bed sores to pneumonia - and the removal of her uterus means she will never have a menstrual cycle or risk developing uterine cancer. Because Ashley was expected to have a large chest size, her parents say removing her breast buds, including the milk glands (while keeping the nipples intact), will save her further discomfort while avoiding fibrocystic growth and breast cancer. They also feared that large breasts could put Ashley at risk of sexual assault. 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 sterilisation, a form of racial cleansing promoted in the 1920s and known as eugenics. However, the case of Ashley X was not made public, and as a result no legal challenges were made. Ashley's doctors, Daniel Gunther and Douglas Diekema, wrote in their paper for the October issue of the Archives of Pediatrics and Adolescent Medicine that the treatment would "remove one of the major obstacles to family care and might extend the time that parents with the ability, resources and inclination to care for their child at home might be able to do so". The paper inspired hundreds of internet postings: many supportive, some furious. "I find this offensive if not perverse," read one. "Truly a milestone in our convenience-minded society." It was the critical comments that finally provoked Ashley's father to respond. While remaining anonymous, he posted a remarkable 9000-word blog entry at 11pm on New Year's Day, justifying his decision. The posting includes links to photographs of Ashley, in which the faces of other family members, including her younger sister and brother, have been blanked out. "Some question how God might view this treatment," he wrote. "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 ... to maximise her quality of life." Ashley's father went on to describe how her height is now expected to remain at about 1.3m and her weight at 34kg. The medical profession is divided. "I think most people, when they hear of this, would say this is just plain wrong," wrote Jeffrey Brosco, of the University of Miami. "It is a complicated story ... (But) high-dose oestrogen therapy to prevent out-of-home placement simply creates a new Sophie's Choice for parents to confront. "If we as a society want to revise the nature of the harrowing predicament that these parents face, then more funds for home-based services, not more medication, is what is called for." The TimesYou can write the doctor - address and email below;_____________________________________________________________ DOUGLAS S. DIEKEMA, M.D., M.P.H. Department of Emergency Services, CH-04 Children's Hospital and Medical Center 4800 Sand Point Way NE, P.O. Box 5371 Seattle, Washington 98105 Voice: (206)-526-2599; FAX: (206)-729-3070 E-mail: [log in to unmask] ________________________________________________________________________
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