Q. By Lindsey Tanner, Associated Press
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.
ON DEADLINE: Debate the case, read family's blog
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," Joel Frader, a doctor and 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.
Douglas Diekema, a doctor and 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.'"
Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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.
ON DEADLINE: Debate the case, read family's blog
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," Joel Frader, a doctor and 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.
Douglas Diekema, a doctor and 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.'"
Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
A. Personally, I think that the parents reasoning is a slippery slope. I know how difficult these decisions are from a personal perspective. But I think such treatment may be against the person's best interests and would not ensure the outcome the parents envisioned. Despite their having the best intentions, I would not advocate this treatment mostly for fear of unforeseen repercussions to the person and fear that it would not accomplish the goal I sought.
At what age range do most babies start to crawl?
Q. I know all babies develop at different times. In what month do they start to crawl? I have a 4 mo old and he rolls all over the place! I am so excited to see him start crawling! 1st baby and a boy!
A. http://www.drgreene.org/body.cfm?id=21&action=detail&ref=354
Rolling over, sitting without support, cruising (walking along furniture), and walking independently are important developmental milestones. Crawling isn't.
Crawling isn't even mentioned in my favorite pediatric development textbook!
This seems strange since, of any of these behaviors, crawling is most associated with babies. The truth is many babies never crawl! They do need to find some way to move across the floor. Each will do so at unpredictable times and in distinctive ways. Your grandson may be a scooter, one who likes to stay upright and scoot across the floor on his bottom. Many babies prefer creeping, or wriggling forward on the stomach. Many children will crab-crawl, moving backwards. And, of course, many children will get up on all fours and crawl forward in the traditional way. Each child is unique.
Some adults are concerned that children who don't crawl in the traditional way will be less coordinated. This is a myth. As long as the baby begins to move across the floor using each arm and each leg, there is no cause for concern.
I'm reluctant to mention time frames, but somewhere between six and ten months I expect babies to discover some way to move horizontally across the floor to get desired objects. Obstacles to this include the child's not spending enough time on the floor, using an infant walker (which often eliminates the desire to learn crawling behaviors -- infant walkers are bad for proper development), having toys brought to the infant, pushing the child to learn to crawl, and physical problems such as muscle weakness. If babies actually crawl, it usually begins at around 8 to 10 months
Rolling over, sitting without support, cruising (walking along furniture), and walking independently are important developmental milestones. Crawling isn't.
Crawling isn't even mentioned in my favorite pediatric development textbook!
This seems strange since, of any of these behaviors, crawling is most associated with babies. The truth is many babies never crawl! They do need to find some way to move across the floor. Each will do so at unpredictable times and in distinctive ways. Your grandson may be a scooter, one who likes to stay upright and scoot across the floor on his bottom. Many babies prefer creeping, or wriggling forward on the stomach. Many children will crab-crawl, moving backwards. And, of course, many children will get up on all fours and crawl forward in the traditional way. Each child is unique.
Some adults are concerned that children who don't crawl in the traditional way will be less coordinated. This is a myth. As long as the baby begins to move across the floor using each arm and each leg, there is no cause for concern.
I'm reluctant to mention time frames, but somewhere between six and ten months I expect babies to discover some way to move horizontally across the floor to get desired objects. Obstacles to this include the child's not spending enough time on the floor, using an infant walker (which often eliminates the desire to learn crawling behaviors -- infant walkers are bad for proper development), having toys brought to the infant, pushing the child to learn to crawl, and physical problems such as muscle weakness. If babies actually crawl, it usually begins at around 8 to 10 months
Does failure to thrive have any long term effects for the future?
Q. Or if you wasn't properly cared as a baby, wasn't fed properly, didn't have any toys, etc
A. Infants with "failure to thrive" usually die from lack of maternal bond, nurture and human care..
But yes, there are long term effects of neglect and they are many and severe. Personality disorders and pervasive developmental disorders develop from homes of abuse and neglect.
But yes, there are long term effects of neglect and they are many and severe. Personality disorders and pervasive developmental disorders develop from homes of abuse and neglect.
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