i think her parents are butt heads. THey wanted a child. They got a sick one. either care for it as it comes or put it in a home if you can't handle, (not my recommendation but realistic), but don't mess with the child just to suit your lifestyle. Do they still have homes like that? I know years and years ago when someone was born "wrong" they were put into a home. Do they still do that now? Do they Have places where these people can get care, attention and learning when the families are unable to - or unwilling to? I thought they sign the child up as a ward of the state? I know to many that may sound mean but that is how is was done in the thirties and forties...I was just wondering if they still do that?
Just my opinion ... but it really looks like these parents were doing what they could in efforts to be able to care for this child long term. This child can't even sit up or roll over. The growth homones keep the child at a size where she is less likely to get bed sores. Her parents are also more capable of carrying her so the child can participate in family functions rather than being locked away in an institution. I hope I'm never faced with the situation these parents are faced with. Even though the surgery and hormones seems drastic - It looks like these parents are trying to do what they can to keep this child close and cared for. I wish no child or family every had to deal with disabilities - but these parents do seem like good people who are just trying to do what they can to keep their family together. No group home will be able to give this child the same love, care, security and stability staying at home with her famaily provides. I can't imagine what I would do in their place. I hope I never have to find out. Stories like these just remind me how fortunate I am to have a healthy family. http://articles.news.aol.com/news/_...s/20070104173509990018?ncid=NWS00010000000001 CHICAGO (Jan. 4) - 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."' 01/04/07 17:33 EST
I agree with you, Melynda. The parents are thinking of the future; they want to be able to continue to care for the child at home, not put her away in an institution in the care of strangers, however kind and well-meaning. The one ethicist who is quoted in opposition seems to have taken a huge leap. (emphasis added) This child doesn't have behavioral problems, she's bedridden! The parents and surgeons did discuss the case with an ethicist before they proceeded. Certainly the treatment is extreme, and should not be considered appropriate in many other situations, but it really looks like the did what was best for the child in this case.
