Friday, December 28, 2007

New ACOG guidelines: Invasive prenatal testing should be offered to all pregnant women

This makes me want to get our book finished all the more and sooner! Doctors and many others need to be educated about Down syndrome.

The ACOG put new guidelines out in January/February of 2006 that recommended all pregnant women be screened for Down syndrome. 90% of babies who are prenatally diagnosed with Down syndrome are aborted. That statistic is disgusting! It seems as if the ACOG is trying to "rid the world" of people with Down syndrome. It's terrible that these babies are aborted because of a chromosomal abnormality, which they had nothing to do with. God is the one who made them with that extra chromosome. Our society has warped views that they have to have "the perfect child." But, what's also terrible is that the amniocentesis and the CVS screenings are not even accurate. They have a lot of false negatives and false positives.

New ACOG guidelines: Invasive prenatal testing should be offered to all pregnant women.

From Obstetrics & Gynecology, Volume 110, No. 6, December 2007, page 1459 (ACOG membership or $20 payment required for articles.)

Heralding a change in standard obstetric practice, the American College of Obstetricians and Gynecologists has recommended that pregnant women of all ages – not just women aged 35 and over — should be offered invasive prenatal diagnostic testing such as amniocentesis and chorionic villus sampling to detect possible genetic abnormalities in their fetuses.

The recommendation, published in a practice bulletin in the December issue of the organization’s journal Obstetrics & Gynecology, dramatically expands women’s access to prenatal diagnosis, effectively making all prenatal tests and screens available to all of the 6 million American women who get pregnant each year. It will establish a new standard of care, and change expectations for insurance coverage and legal liability involving pregnancy.

Until now, obstetricians have usually offered invasive testing just to women at or above age 35 at delivery. The age threshold was chosen because at that age the risk of miscarriage as a result of the testing was roughly equal to the risk of having a child with Down syndrome, the most common genetic abnormality occurring in live births. In addition, the medical community balanced the cost of offering the testing against their calculation of the cost savings associated with preventing the birth of an infant with Down syndrome.

This past January, ACOG expanded the scope of prenatal testing by recommending for the first time that all pregnant women regardless of age be offered prenatal screening, a process in which a woman’s blood is used to calculate the risk that her fetus has an abnormality.

The December ACOG bulletin will open prenatal testing access wider still. The current bulletin does not explain why the professional organization has now dramatically expanded access to prenatal testing twice within a year. Researchers have maintained that universal access to prenatal testing will allow women to make their own informed decisions regarding their pregnancies and minimize disparities in access to health care.

The changes come at a time when growing numbers of medical malpractice lawsuits are pushing insurance costs for obstetricians and gynecologists to record highs, resulting in a situation that ACOG has called a “medical liability crisis.”

In a statement posted on the group’s website last year, ACOG executive vice president Ralph W. Hale said the rising tide of lawsuits was caused not by a high rate of medical wrongdoing but by unreasonable public expectations. “Ob-gyns are vulnerable because they practice in a high-risk field, and all too often, doctors are held liable for less than perfect outcomes,” he said.

ACOG’s current recommendation seems to thrust the 49,000-member professional organization deeper into the cultural debate over public attitudes toward abortion, particularly about where to draw the line between preventing disability and accepting human diversity.

The National Down Syndrome Congress (NDSC) last January condemned ACOG’s recommendation for universally offered prenatal screening, saying it conveyed “tacit approval for terminating pregnancies where the fetus has Down syndrome.” Studies say that approximately 9 out of 10 pregnancies in the U.S. in which Down syndrome is diagnosed end in abortion.

The NDSC also cited research noting that many doctors are not adequately prepared to deliver a diagnosis of Down syndrome, and often use negative language and out-of-date information.

Down syndrome, which results when a person has three copies of the 21st chromosome instead of the usual pair, is longest known and most common genetic birth defect, as well as the most common cause of intellectual disability. Approximately 250,000-350,000 Americans have Down syndrome, which occurs once in every 733 to 1,000 births, according to the NDSC and the National Down Syndrome Society.

Advocacy groups and parents say gains in health care and education have brought about markedly improved outcomes for these individuals over the past two decades, with many people with Down syndrome now completing high school, holding jobs and living semi-independently. But parents say these gains have not been adequately documented and are poorly understood within the obstetrics community.

In an apparent nod to the NDSC’s criticism, ACOG included in its December practice bulletin for the first time the recommendation that prospective parents who receive a diagnosis of a fetal disorder should be provided with “detailed information, if known, about the natural history of individuals” with the disorder.

ACOG also noted that “it may be very helpful” to refer prospective parents to advocacy groups such as the NDSC or the NDSS.

The bulletin does not, however, offer any recommendations for collecting or distributing information to doctors about the lives of people with Down syndrome or other chromosomal abnormalities, nor for training its 49,000 members in delivering and interpreting prenatal test information. A study published in ACOG’s journal last year found that 45 percent of obstetricians rated their training about prenatal testing as “barely adequate or nonexistent.”

As a result of the new ACOG bulletin, each pregnant woman will now need to decide which is greater: her fear of a chromosomal abnormality, or her fear that invasive testing could harm her fetus. The ACOG bulletin estimates that the risk of miscarriage as a result of the invasive tests is “as low as” one in 300-500, and “may be even lower with experienced individuals or centers.” Other estimates say that approximately one in every 200 women who undergoes invasive testing will miscarry her pregnancy.

The risk of a fetus with a chromosomal abnormality varies with the mother’s age. According to ACOG data, the lowest recorded risk goes to 19-year-olds, with a risk of 1 in 555, and the highest goes to a 49-year-old, with a risk of 1 in 6.

The financial impact of the new ACOG bulletin is not known, but could extend above the billion-dollar mark. Amniocentesis and chorionic villus sampling (CVS), the invasive tests, are both more expensive and more accurate than the maternal blood test screens. The consumer cost of each amniocentesis is more than $1,000. Chorionic villus sampling costs between $600 and $1200. More invasive tests would also call for an increase in costs for training, facilities and equipment.

Amniocentesis and CVS each involve removing and examining material from inside the uterus during pregnancy with a long needle or plastic tube to check for chromosomal differences.

The maternal blood-test screens do not deliver definitive results but only report the odds that a particular fetus may have an abnormality. They also carry a significant risk of both false positives and false negatives.

In a tacit acknowledgment of the ongoing abortion debate, the bulletin notes that “Prenatal diagnosis is not performed solely for assistance in the decision of pregnancy termination. It can provide useful information for the physician and the patient.”

The practice bulletin listed the recommendation for offering invasive diagnostic testing to all pregnant women as a “Level C” recommendation, one that is “based primarily on consensus and expert opinion.” This is the lowest rank used in justifying ACOG recommendations.

Higher rankings that may be used for ACOG recommendations are “Level A” (”based on good and consistent scientific evidence”) and “Level B” (”based on limited or inconsistent scientific evidence.”)

Thursday, December 13, 2007

Diet & Nutrition Study

DSRF is doing a new study:

Nutritional Interventions in Children wtih Down's syndrome (NICDS study)
"Can nutritional intervention prevent or reduce the risks of associated diseases and illnesses in Down's syndrome?"

For more information on the study, here's a link ~

The aim of this study is to see if nutritional interventions can help to prevent or reduce the risks that children with Down's Syndrome are exposed to in terms of illnesses such as type 2 diabetes, vascular disease, obesity, leukaemia and early onset dementia. Much is known about the ways in which nutrition and lifestyle can be modified to prevent, or at least reduce the risk of these disorders."

Monday, December 3, 2007

Website for Book - Down Syndrome: What You CAN Do

As some may know, my mother and I are in the process of writing a book about Down syndrome. The title is going to be "Down Syndrome: What You CAN Do." I put a website up with information about the book. The link is:

Like Any Other Boy

I wrote this and submitted it to the Band of Angels site for the brothers & sisters column on the site by Harper Kidder.


Like Any Other Boy

I’m the oldest of 11 children. One of my 4 brothers is 2 ½ years old. He also happens to have a twin sister, who is 5 minutes younger than him.

My brother is like any other little boy. He likes to play with cars. He likes to run and play outside. When he hears that one of the kids is going outside, he always asks to have his shoes put on and to go outside with them. He chases his twin sister around. He really enjoys playing ball. When all the other kids play pass the ball, he is right there with them passing the ball. He even likes to play with baby dolls with his twin sister!

One of his favorite things to do is dance! He dances all the time and is so cute. He has some of the cutest little jigs and rhythm. Often times the whole family will be watching him dance because it’s such a blast watching him. One of the best times when it comes to dancing was at this past Thanksgiving at our friend’s house. All of us (including our friends who were there) were in a big circle and each person was taking their turn doing a dance in the middle while everyone followed them. It finally came to where everyone had done it, so we asked my bother to come in the middle and dance. He did it perfectly!

I guess I should mention now that my brother has Down syndrome. When my brother was born his diagnosis was news to us. But, contrary to the “he can’t” and “he won’t” statements that we were told back on that February day 2 ½ years ago, my brother has exceeded and shown that those statements were wrong. He is just a part of our family; one of the kids. He can do a lot.

One thing about him is that he is so loving, so happy almost all the time and so much fun. He puts a smile on our faces! We are thankful that God has shown great mercy on him and us and made him excel way beyond what we were told.

- Qadoshyah

19 yr. old sister to boy(DS)/girl twins - February. 05

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