nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.
DETROIT — Sarah Itoh, a self-described “almost-eleven-and-a-half,†betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.
She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.
“I am so lucky I get to do so many things,†she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.â€
Sarah’s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.
Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.
About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.
Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents is seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.
They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call†network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.
The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.
“We want people who make this decision to know our kids,†said Lucy Talbot, the president of a support group here who prevailed on the hospital to give Sarah and two teenage friends an audience. “We want them to talk to us.â€
The focus on the unborn is new for most parent advocates, who have traditionally directed their energy toward support for the born. But after broader testing was recommended in January, the subject began to hijack agendas at local support group meetings.
A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain.
“The impact of these changes on the Down syndrome community is going to be huge,†said Dani Archer, a mother in Omaha who has set aside other Down syndrome volunteer work to strategize about how to reach prospective parents.
The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49. As adults, some hold jobs, but many have difficulty living independently.
“There are many couples who do not want to have a baby with Down syndrome,†said Deborah A. Driscoll, chief of the obstetrics department at the University of Pennsylvania and a lead author of the new recommendation from the obstetricians’ group. “They don’t have the resources, don’t have the emotional stamina, don’t have the family support. We are recommending this testing be offered so that parents have a choice.â€
But the richness of their children’s lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition.
With no formal financing or organization, parents are arranging to meet with local obstetricians, rewriting dated literature and pleading with health care workers to give out their phone numbers along with test results. Medical professionals have for the most part responded with caution. Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision.
Their goal, parents say, is not to force anyone to take on the task of parenting a child with disabilities. Many participants in the ad-hoc movement describe themselves as pro-choice. Yet some see themselves as society’s first line of defense against a use of genetic technology that can border on eugenics.
“For me, it’s just faces disappearing,†said Nancy Iannone, of Turnersville, N.J., mother to four daughters, including one with Down syndrome. “It isn’t about abortion politics or religion, it’s a pure ethical question.â€
Others admit freely to a selfish motive for their new activism. “If all these people terminate babies with Down syndrome, there won’t be programs, there won’t be acceptance or tolerance,†said Tracy Brown, 37, of Seattle, whose 2-year-old son, Maxford, has the condition. “I want opportunities for my son. I don’t know if that’s right or wrong, but I do.â€
Ms. Brown has taken it upon herself to serve as a community resource on Down syndrome for prospective parents. She was encouraged when a counselor at the University of Washington Medical Center sent her an e-mail message recently with a question from a patient.
What developmental age equivalent, the patient wanted to know, do most people with Down syndrome reach?
_________________ For your sake I hope heaven and hell are really there but I wouldn't hold my breath
If you think the 90% abortion rate is disheartening just wait until you hear from the people on here defending it as a legitimate reason for an abortion while condemning people who would choose to abort a gay baby.
Joined: Sun Oct 17, 2004 1:14 am Posts: 37778 Location: OmaGOD!!! Gender: Male
tyler wrote:
If you think the 90% abortion rate is disheartening just wait until you hear from the people on here defending it as a legitimate reason for an abortion while condemning people who would choose to abort a gay baby.
Here I thought we had this thread before...
_________________ Unfortunately, at the Dawning of the Age of Aquarius, the Flower Children jerked off and went back to sleep.
If you think the 90% abortion rate is disheartening just wait until you hear from the people on here defending it as a legitimate reason for an abortion while condemning people who would choose to abort a gay baby.
If you think the 90% abortion rate is disheartening just wait until you hear from the people on here defending it as a legitimate reason for an abortion while condemning people who would choose to abort a gay baby.
Boy you were right! Look at all those assholes making that argument you mentioned!
Joined: Fri May 12, 2006 8:03 am Posts: 13555 Location: In your PANTS! Gender: Female
An interesting article. 90% seems to be a very high number and that surprises me a little. The issues with prenatal testing has always revolved around the right to terminate after discovering there are complications, whatever those complications may be. Why I have no issue with people chosing this course of action as it is their right to do, I am not sure whether or not I would terminate a pregnancy on these grounds but I suppose you can't really make that decision until you find yourself in the situation. I would be interested in hearing others thoughts on the matter.
*I must have missed the gay baby thread, that would have been interesting I am sure*
_________________
Owl_Farmer wrote:
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Joined: Mon Oct 18, 2004 1:03 am Posts: 24177 Location: Australia
tyler wrote:
If you think the 90% abortion rate is disheartening just wait until you hear from the people on here defending it as a legitimate reason for an abortion while condemning people who would choose to abort a gay baby.
yeah, cos they're exactly the same
_________________ Oh, the flowers of indulgence and the weeds of yesteryear, Like criminals, they have choked the breath of conscience and good cheer. The sun beat down upon the steps of time to light the way To ease the pain of idleness and the memory of decay.
If you think the 90% abortion rate is disheartening just wait until you hear from the people on here defending it as a legitimate reason for an abortion while condemning people who would choose to abort a gay baby.
yeah, cos they're exactly the same
Some people believe that and they have just as much right to an abortion as anyone else.
The reality is that, in our life times, parents will be able to select (or maybe even engineer) sperm/egg combinations that give them the kids they want. They are going to be choosing everything else, what's sexual orientation matter?
I've never experienced this, but when they tell you that your fetus is going to have Downs is it possible to know the child's level of developmental impairment? I doubt it, right?
Joined: Sun Oct 17, 2004 7:19 pm Posts: 39068 Location: Chapel Hill, NC, USA Gender: Male
I thought pd made a good argument the last time the gay vs. downs abortion argument came up.
I personally don't think I could abort a child because I found out it had downs, and it crushes my spirit to find out that so many people could.
_________________ "Though some may think there should be a separation between art/music and politics, it should be reinforced that art can be a form of nonviolent protest." - e.v.
nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.
DETROIT — Sarah Itoh, a self-described “almost-eleven-and-a-half,†betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.
She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.
“I am so lucky I get to do so many things,†she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.â€
Sarah’s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.
Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.
About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.
Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents is seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.
They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call†network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.
The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.
“We want people who make this decision to know our kids,†said Lucy Talbot, the president of a support group here who prevailed on the hospital to give Sarah and two teenage friends an audience. “We want them to talk to us.â€
The focus on the unborn is new for most parent advocates, who have traditionally directed their energy toward support for the born. But after broader testing was recommended in January, the subject began to hijack agendas at local support group meetings.
A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain.
“The impact of these changes on the Down syndrome community is going to be huge,†said Dani Archer, a mother in Omaha who has set aside other Down syndrome volunteer work to strategize about how to reach prospective parents.
The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49. As adults, some hold jobs, but many have difficulty living independently.
“There are many couples who do not want to have a baby with Down syndrome,†said Deborah A. Driscoll, chief of the obstetrics department at the University of Pennsylvania and a lead author of the new recommendation from the obstetricians’ group. “They don’t have the resources, don’t have the emotional stamina, don’t have the family support. We are recommending this testing be offered so that parents have a choice.â€
But the richness of their children’s lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition.
With no formal financing or organization, parents are arranging to meet with local obstetricians, rewriting dated literature and pleading with health care workers to give out their phone numbers along with test results. Medical professionals have for the most part responded with caution. Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision.
Their goal, parents say, is not to force anyone to take on the task of parenting a child with disabilities. Many participants in the ad-hoc movement describe themselves as pro-choice. Yet some see themselves as society’s first line of defense against a use of genetic technology that can border on eugenics.
“For me, it’s just faces disappearing,†said Nancy Iannone, of Turnersville, N.J., mother to four daughters, including one with Down syndrome. “It isn’t about abortion politics or religion, it’s a pure ethical question.â€
Others admit freely to a selfish motive for their new activism. “If all these people terminate babies with Down syndrome, there won’t be programs, there won’t be acceptance or tolerance,†said Tracy Brown, 37, of Seattle, whose 2-year-old son, Maxford, has the condition. “I want opportunities for my son. I don’t know if that’s right or wrong, but I do.â€
Ms. Brown has taken it upon herself to serve as a community resource on Down syndrome for prospective parents. She was encouraged when a counselor at the University of Washington Medical Center sent her an e-mail message recently with a question from a patient.
What developmental age equivalent, the patient wanted to know, do most people with Down syndrome reach?
My wife and I would have aborted our child if it had downs. We actually paid for the more expensive test to make sure it would not. I have worked with the mentally ill most of my life and can tell you, there is no way I would bring a baby with down syndrome into this world. It's a painful life for all of those involved.
_________________ Do you like crappy amateur photography? Check out my photo blog here.
My wife and I would have aborted our child if it had downs. We actually paid for the more expensive test to make sure it would not. I have worked with the mentally ill most of my life and can tell you, there is no way I would bring a baby with down syndrome into this world. It's a painful life for all of those involved.
What do you base this on? Because I happen to be a legal guardian for 3 people with Down's (and 17 other people with non specified developmental disorderes), and they are the happiest people I know. I'll admit, it was not always like that for them, but it certainly is now.
_________________ cirlces they grow and they swallow people whole half their lives they say goodnight to wives they'll never know got a mind full of questions and a teacher in my soul and so it goes
nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.
DETROIT — Sarah Itoh, a self-described “almost-eleven-and-a-half,†betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.
She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.
“I am so lucky I get to do so many things,†she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.â€
Sarah’s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.
Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.
About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.
Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents is seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.
They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call†network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.
The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.
“We want people who make this decision to know our kids,†said Lucy Talbot, the president of a support group here who prevailed on the hospital to give Sarah and two teenage friends an audience. “We want them to talk to us.â€
The focus on the unborn is new for most parent advocates, who have traditionally directed their energy toward support for the born. But after broader testing was recommended in January, the subject began to hijack agendas at local support group meetings.
A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain.
“The impact of these changes on the Down syndrome community is going to be huge,†said Dani Archer, a mother in Omaha who has set aside other Down syndrome volunteer work to strategize about how to reach prospective parents.
The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49. As adults, some hold jobs, but many have difficulty living independently.
“There are many couples who do not want to have a baby with Down syndrome,†said Deborah A. Driscoll, chief of the obstetrics department at the University of Pennsylvania and a lead author of the new recommendation from the obstetricians’ group. “They don’t have the resources, don’t have the emotional stamina, don’t have the family support. We are recommending this testing be offered so that parents have a choice.â€
But the richness of their children’s lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition.
With no formal financing or organization, parents are arranging to meet with local obstetricians, rewriting dated literature and pleading with health care workers to give out their phone numbers along with test results. Medical professionals have for the most part responded with caution. Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision.
Their goal, parents say, is not to force anyone to take on the task of parenting a child with disabilities. Many participants in the ad-hoc movement describe themselves as pro-choice. Yet some see themselves as society’s first line of defense against a use of genetic technology that can border on eugenics.
“For me, it’s just faces disappearing,†said Nancy Iannone, of Turnersville, N.J., mother to four daughters, including one with Down syndrome. “It isn’t about abortion politics or religion, it’s a pure ethical question.â€
Others admit freely to a selfish motive for their new activism. “If all these people terminate babies with Down syndrome, there won’t be programs, there won’t be acceptance or tolerance,†said Tracy Brown, 37, of Seattle, whose 2-year-old son, Maxford, has the condition. “I want opportunities for my son. I don’t know if that’s right or wrong, but I do.â€
Ms. Brown has taken it upon herself to serve as a community resource on Down syndrome for prospective parents. She was encouraged when a counselor at the University of Washington Medical Center sent her an e-mail message recently with a question from a patient.
What developmental age equivalent, the patient wanted to know, do most people with Down syndrome reach?
My wife and I would have aborted our child if it had downs. We actually paid for the more expensive test to make sure it would not. I have worked with the mentally ill most of my life and can tell you, there is no way I would bring a baby with down syndrome into this world. It's a painful life for all of those involved.
Do you think a lot of people in the field share your view? My friend who works in the field seems to adore the mentally handicapped. Not that she'd want a baby with Downs, but she appears to have much more a soft spot for them than, say, me.
Joined: Wed Feb 22, 2006 1:37 am Posts: 2465 Location: A dark place
Many people seem to stick with stereotypes when it comes to Down's. Many or most are not the happy-go-lucky types you see on TV. They have varying personalities like all people. I loved the work and the people, but saw too much hurt. I saw too many good parents give up. It's a tough life.
_________________ Do you like crappy amateur photography? Check out my photo blog here.
Joined: Thu Mar 29, 2007 4:36 am Posts: 6781 Location: Struggle Town
Firstly I think the article is unbalanced, but it has been effective as from many of you it has inspired a knee jerk emotional reaction. Essentially though it is every individuals right to make choices regarding their bodies and their future. It is not an easy decision to make either way but choosing to abort a Down's baby is not the same as trying to create a designer baby. It is very easy to sit back and be moralistic until you have been put in the position.
Many people seem to stick with stereotypes when it comes to Down's. Many or most are not the happy-go-lucky types you see on TV. They have varying personalities like all people. I loved the work and the people, but saw too much hurt. I saw too many good parents give up. It's a tough life.
Again, what are you basing this on? And is the life of a Down's person any more difficult than that of say a crack baby, or a even a regular kid who has to deal with absent parents or a messy divorce? What about a kid with a cleft palate?
_________________ cirlces they grow and they swallow people whole half their lives they say goodnight to wives they'll never know got a mind full of questions and a teacher in my soul and so it goes
Joined: Wed Feb 22, 2006 1:37 am Posts: 2465 Location: A dark place
kiddo wrote:
turned2black wrote:
Many people seem to stick with stereotypes when it comes to Down's. Many or most are not the happy-go-lucky types you see on TV. They have varying personalities like all people. I loved the work and the people, but saw too much hurt. I saw too many good parents give up. It's a tough life.
Again, what are you basing this on? And is the life of a Down's person any more difficult than that of say a crack baby, or a even a regular kid who has to deal with absent parents or a messy divorce? What about a kid with a cleft palate?
I'm basing this on 10 years of working with Down's and mental retardation. Are you upset? I don't understand. Based on our life experiences, my wife and I would have aborted the fetus if it had Down's. That's it. We are informed people.
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