Her name is Ashley X, and she is the little girl who will never grow up.
QUOTE
The reason for the controversy is this: Three years ago, when Ashley began to display early signs of puberty, her parents instructed doctors to remove her uterus, appendix and still-forming breasts, then treat her with high doses of estrogen to stunt her growth.
In other words, Ashley was sterilized and frozen in time, for ever to remain a child. She was only 6 years old.
Ashley, the 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.
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 that 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 that 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 sterilization, a form of racial cleansing promoted in the 1920s and known as eugenics (it was satirized in F. Scott Fitzgerald's novel "The Great Gatsby").
However, the case of Ashley X was not made public, and, as a result, no legal challenges were ever 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 postings on the Internet: many supportive, some disapproving but sympathetic, others 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 9,000-word blog entry at 11 p.m. 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 Ashley's 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 (including the brains that He endowed them with) to maximize her quality of life."
Ashley's father went on to describe how her height is now expected to remain at about 4 feet 5 inches, and her weight at 75 pounds.
Without the treatment, she would have grown into a woman of average height and weight, probably about 5 feet 6 inches and 125 pounds, with a normal lifespan.
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, in an editorial. "But it is a complicated story ... you can understand the difficulties. [But] high-dose estrogen 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."
George Dvorsky, a director of the Institute for Ethics and Emerging Technologies, countered: "If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity.
"The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."
In other words, Ashley was sterilized and frozen in time, for ever to remain a child. She was only 6 years old.
Ashley, the 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.
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 that 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 that 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 sterilization, a form of racial cleansing promoted in the 1920s and known as eugenics (it was satirized in F. Scott Fitzgerald's novel "The Great Gatsby").
However, the case of Ashley X was not made public, and, as a result, no legal challenges were ever 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 postings on the Internet: many supportive, some disapproving but sympathetic, others 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 9,000-word blog entry at 11 p.m. 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 Ashley's 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 (including the brains that He endowed them with) to maximize her quality of life."
Ashley's father went on to describe how her height is now expected to remain at about 4 feet 5 inches, and her weight at 75 pounds.
Without the treatment, she would have grown into a woman of average height and weight, probably about 5 feet 6 inches and 125 pounds, with a normal lifespan.
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, in an editorial. "But it is a complicated story ... you can understand the difficulties. [But] high-dose estrogen 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."
George Dvorsky, a director of the Institute for Ethics and Emerging Technologies, countered: "If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity.
"The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."
The doctor that performed surgery on Ashley eventually commited suicide after intense critisism, and guilt.
EDIT: Picture:
EDIT AGAIN: READ THIS TOO:
Ashley's Story
[Spoiler]
Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve.
Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our Pillow Angel since she is so sweet and stays right where we place her—usually on a pillow.
Ashley is a beautiful girl whose body is developing normally with no external deformities; see photos. She is expected to live a full life and was expected to attain a normal adult height and weight. Ashley being in a stable condition is a blessing because many kids with similarly severe disabilities tend to deteriorate and not survive beyond five years of age.
Ashley is alert and aware of her environment; she startles easily. She constantly moves her arms and kicks her legs. Sometimes she seems to be watching TV intently. She loves music and often gets in celebration mode of vocalizing, kicking, and choreographing/conducting with her hands when she really likes a song (Andrea Boccelli is her favorite – we call him her boyfriend). She rarely makes eye-contact even when it is clear that she is aware of a person’s presence next to her. Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists.
Ashley brings a lot of love to our family and is a bonding factor in our relationship; we can’t imagine life without her. She has a sweet demeanor and often smiles and expresses delight when we visit with her, we think she recognizes us but can’t be sure. She has a younger healthy sister and brother. We constantly feel the desire to visit her room (her favorite place with special lights and colorful displays) or have her with us wanting to be in her aura of positive energy. We’re often gathered around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit. As often as we can we give her position changes and back rubs, sweet talk her, move her to social and engaging places, and manage her entertainment setting (music or TV). In return she inspires abundant love in our hearts, so effortlessly; she is such a blessing in our life!
To express how intensely we feel about providing Ashley with the best care possible, we would like to quote from a private email that we received from a loving mother with her own 6 year old Pillow Angel: “In my mind, I have to be immortal because I have to always be here on Earth to take care of my precious child. Taking care of him is difficult, but it is never a burden. I am [his] eyes, ears and voice. He is my best friend, and I have dedicated my life to providing joy and comfort to him. To my last breath, everything I will ever do will be for him or because of him. I cannot adequately put into words the amount of love and devotion I have for my child. I am sure that you feel the same way about Ashley.”
The chance of Ashley having significant improvement, such as being able to change her position in bed, let alone walk, is non-existent. She has been at the same level of cognitive, mental and physical developmental ability since about three months of age. Ashley has aged and grown in size but her mental and physical abilities have remained and will remain those of an infant.
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. The result is the “Ashley Treatment.” [/spoiler]
