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All pregnant women in US to be offered Down Syndrom test

lizskid

BANNED
WASHINGTON (AP) -- There's a big change coming for pregnant women: Down syndrome testing no longer hinges on age 35.
This week, the American College of Obstetricians and Gynecologists begins recommending that every pregnant woman, regardless of age, be offered a choice of tests for this common birth defect.
The main reason: Tests far less invasive than the long-used amniocentesis are now widely available, some that can tell in the first trimester the risk of a fetus having Down syndrome or other chromosomal defects.
It's a change that promises to decrease unnecessary amnios -- giving mothers-to-be peace of mind without the ordeal -- while also detecting Down syndrome in moms who otherwise would have gone unchecked.
The new guideline is published in the January issue of the journal Obstetrics & Gynecology.
About one in 800 babies has Down syndrome, a condition where having an extra chromosome causes mental retardation, a characteristic broad, flat face and small head and, often, serious heart defects.
Age 35 was always a somewhat arbitrary threshhold for urging mothers-to-be to seek testing. Yes, the older women are, the higher their risk of having a baby with Down syndrome.
Gradual risk increase

But it's a gradual increase in risk -- from one in 1,200 at age 25 to about one in 300 at age 35. Nothing suddenly changes at the 35th birthday. Indeed, because more babies are born to younger women than older ones, women under 35 actually give birth to most of the nation's children with Down syndrome.
"It's clear there's no magic jump at 35," said Dr. James Goldberg of San Francisco Perinatal Associates, a member of the ACOG committee that developed the guideline. "We've done away with age 35 because the screening tests have gotten much better."
It's not just a question of whether to continue the pregnancy. Prenatal diagnosis also is important for those who wouldn't consider abortion, because babies with Down syndrome can need specialized care at delivery that affects hospital selection, he added.
The original age-35 trigger was chosen years ago when doctors had less information about the risk of Down syndrome, and the only choice for prenatal detection was an amnio, using a needle to draw fluid from the amniotic sac, he said. Amnios are highly accurate but were reserved for women at higher risk of an affected pregnancy because they occasionally cause miscarriage. A study this fall put the miscarriage risk at one in 1,600 pregnancies, far lower than previous estimates.
Also today, women have more options. Doctors already frequently offer younger women blood tests that don't definitively diagnose Down syndrome such as an amnio or a similar invasive test called chorionic villus sampling -- but that can signal who's at higher risk.
The newest method, topping ACOG's recommendation for everyone, is a first-trimester screening that combines blood tests with a simple ultrasound exam, called a "nuchal translucency test" to measure the thickness of the back of the fetal neck.
Studies from England, where the nuchal translucency combo has been used for about a decade, and the U.S. conclude that screening method is more than 80 percent accurate, with a very small risk of falsely indicating Down syndrome in a healthy fetus. It is performed between 11 and 13 weeks into pregnancy, and women are usually given numerical odds of carrying an affected fetus.
A woman determined to be high risk then still has time for an invasive test to tell for sure.
Women who don't seek prenatal care until the second trimester can still undergo blood tests known as the triple or quadruple screens.
The guideline also says women of any age can choose to skip the screening and go straight for invasive testing, an approach that might appeal to those with chromosomal defects in the family.
"This new recommendation makes a lot of sense," said Dr. Nancy Green of the March of Dimes. "Maternal age no longer plays such an important role because the screening is better."
Each test comes with pros and cons, and the new guideline advises doctors to check what's available in their communities _ nuchal translucency testing isn't easy to get everywhere -- and discuss the best options with each patient.

What do you think? I think it's a great medical advance, but poses real problems for the expectant women should it be positive. What would you do?
 

Buttercup

Veteran Member
Laura said:
What do you think? I think it's a great medical advance, but poses real problems for the expectant women should it be positive. What would you do?
Ahh, interesting. This is news to me. Still, if I had the test and found out I was carrying a Down's baby, I would continue with the pregnancy. Down's chidren/adults are delightful to be around.
 

lizskid

BANNED
Me, too, Rhonda, but I know a lot of people don't have the positive images and experiences I have. I think this could be a real heart wrencher for many. This news was just published today on CNN.
 

evearael

Well-Known Member
It is a great advance because it would allow the expectant parents more time to prepare for the special needs throughout pregnancy, birth and raising the child. It would certainly be a shock to the parents regardless of when they found out and I would hope that the ob/gyn involved would be competent and compassionate to counsel them about Down's Syndrome and refer them to the appropriate resources.
 

Djamila

Bosnjakinja
1/800? That seems awefully high. I've don't recall having ever seen a person with down's syndrome apart from on television?
 

Buttercup

Veteran Member
Djamila said:
1/800? That seems awefully high. I've don't recall having ever seen a person with down's syndrome apart from on television?
Seriously? Do people in Bosnia keep those with disabilities hidden or something?
 

Djamila

Bosnjakinja
Buttercup said:
Seriously? Do people in Bosnia keep those with disabilities hidden or something?

Well, it's like comparing apples and oranges, really. Mentally disabled people have very little worth in most Slavic societies, including Bosnia - but especially notable are Russia, Ukraine, and Slovakia.

Basically mentally disabled people, for whom the official term in Bosnia is "invalid", are usually handed over to what are called Invalid Wards. They're like orphanages only a little worse - bars on the windows, no paint, and so on.

And that's it, really. Families respond differently. Some actually keep a mentally disabled child, but they would be a very small minority. Most women consider it something shameful to give birth to an "invalid", so they would usually say the baby died in the hospital.

It wasn't quite this bad before we were occupied by the Nazis in the 1940s, but it was similar. They simply changed the structure of institutionalization - which has remained in Bosnia more or less the same, just without the execution facilities.
 

Buttercup

Veteran Member
Well, you answered your own question as to why you've never seen a Down's person except on TV. They are scurried away. And that's very sad. People with Down's are delightful to be around 90% of the time. They are perpetually happy, helpful and natural optimists. Alot of them have a tendency to be huge food lovers though. :)
 

Djamila

Bosnjakinja
True, but I mean - you'd think you'd hear about it at least? Since the war, we have a lot of women giving birth to babies without limbs or some such thing - it's caused by the depleted uranium in western weapons. You never see them on the street, you never see a woman holding a deformed baby - but you know about it.
 

lizskid

BANNED
I also know several who hold jobs, like working at McDonald's or stocking grocery shelves, and in the right environment, they can learn a lot! My son can read the newspaper. But, to balance that, he can't tie his shoes. We've all got something we can't do!
 

lizskid

BANNED
evearael said:
It is a great advance because it would allow the expectant parents more time to prepare for the special needs throughout pregnancy, birth and raising the child. It would certainly be a shock to the parents regardless of when they found out and I would hope that the ob/gyn involved would be competent and compassionate to counsel them about Down's Syndrome and refer them to the appropriate resources.

Oh, I get all that, and totally agree. I just feel for the folks who want children so badly, but then will consider terminating such a pregnancy. Seems to me it might magnify the heartbreak.
 

Buttercup

Veteran Member
Djamila said:
True, but I mean - you'd think you'd hear about it at least? Since the war, we have a lot of women giving birth to babies without limbs or some such thing - it's caused by the depleted uranium in western weapons. You never see them on the street, you never see a woman holding a deformed baby - but you know about it.
Is the uranium leaked in the soils or water?

I"m not too surprised you don't hear about the subject if it's largely thought to be shameful. No one wants to talk about it.

Still, is something being done about the poisoning?
 

Djamila

Bosnjakinja
I'm not sure, Buttercup. I know they (really not sure who, maybe the Americans?) said in the news they cleaned up a few sites in and around Sarajevo and then told everyone it was perfectly safe. So people here don't worry about it.

I know it's mainly bad in Christian areas where the Serbian army was, since it was these areas NATO bombed to end to the war.

Towns like Pale, for example, southeast of Sarajevo, had all their non-Orthodox Christian residents killed or expelled in 1992 and were bombed by NATO in 1995 to stop the siege of Sarajevo.

The people living there are still people I'd probably shoot if I came face to face with them, so most Bosnians - and certainly not the Bosnian government - don't give a **** about them.

These areas still have some depleted uranium.

And there's other places no one knows about I'm sure.
 
It's rather sad to know how some countries approach disabilities. I actually worked with a child who had multiple disabilities, all ranging from mental to physical. But she really was a joy to work with and it's so amazing to see how resilient children can be in spite of what they are or are not capable of accomplishing.

I have a feeling that the abortion rate may stay the same if more women chose to terminate their pregnancies after finding out that the fetus is testing positive-- but unfortunately, we can't do anything about it. What we can do is support private and government programs that provide resources for those who have disabilities. I currently work with adults with mental disabilities and with children who have autism spectrum. With the right resources, almost everyone can be a capable citizen of their community.

I have nothing against in-utero testing, however I don't think that I would want to get a test for anything. It's really a matter of individual choice.
 

Buttercup

Veteran Member
Mila,

Because handicaps are shamefull in Bosnia, would a large percentage of women get abortions if they knew they carried a Down's child?
 

Djamila

Bosnjakinja
Buttercup said:
Mila,

Because handicaps are shamefull in Bosnia, would a large percentage of women get abortions if they knew they carried a Down's child?

I don't know, Buttercup.

I can only say that I would never get an abortion. I wouldn't keep a mentally disabled baby but I consider abortion to be murder and it's something I couldn't do.

Maybe faced with the situation, I would feel different - I don't know.
 

Buttercup

Veteran Member
Yeah, I understand. I wouldnt get an abortion either but it is very difficult to know what one would do in that situation.
 

Katzpur

Not your average Mormon
Djamila said:
1/800? That seems awefully high. I've don't recall having ever seen a person with down's syndrome apart from on television?
Oh my gosh, that's odd. I know lots of Down Syndrome kids.
 

Katzpur

Not your average Mormon
Djamila said:
I wouldn't keep a mentally disabled baby but I consider abortion to be murder and it's something I couldn't do.
With Down Syndrome, the condition is clearly evident at birth, but this is not the case with all kind of mental retardation. Suppose you didn't find out until your child was eighteen months old that he was mentally disabled? And what about mental conditions such as autism. A lot of the time they are not diagnosed until a child is two or three years old. How you do think you'd feel about institutionalizing a child you'd grown to love?
 

Djamila

Bosnjakinja
Katzpur said:
With Down Syndrome, the condition is clearly evident at birth, but this is not the case with all kind of mental retardation. Suppose you didn't find out until your child was eighteen months old that he was mentally disabled? And what about mental conditions such as autism. A lot of the time they are not diagnosed until a child is two or three years old. How you do think you'd feel about institutionalizing a child you'd grown to love?

I don't know what I would do - but I can say the normal thing to do in Bosnia would be to institutionalize the child. It's a very difficult experience for all involved, and I am aware of such a situation in a friend's family. It's basically like a funeral, like the child died. The parents are destroyed, devastated, say goodbye, and that's it.

I can imagine very easily falling into this sequence, more easily than I can imagine anything else.
 
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