Prenatal Testing and Down Syndrome

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Prenatal testing, whereby tests are performed in utero to ascertain the health of the child, is now considered standard prenatal care.  Unborn children have been screened in the womb for Down Syndrome in women over age thirty-five for many years.  However, the American College of Obstetricians and Gynecologists recommends that doctors perform a new screening procedure on all pregnant women, regardless of age.  These tests raise the question of what would happen if a family is told (sometimes erroneously) that their child does have Down Syndrome or other disabilities.  Is this information sought in order to better prepare parents or to abort less-than-perfect children before they are born?  

Testing Procedures
Until just recently, the Down Syndrome test was performed in the second trimester by amniocentesis.  Suggested between fifteen and twenty weeks of gestation, a needle penetrates the amniotic sac, drawing amniotic fluid for testing.  One of every 200-400 procedures results in a miscarriage.  The baby is also at risk for being pricked by the needle, which is painful since unborn children can feel pain at this point in the pregnancy.
 
A few years ago, a study conducted on 38,000 American women revealed that Down Syndrome can be detected at just eleven weeks after conception.  The test consists of a first-trimester sonogram and two blood tests.  This test is slightly more accurate than the current quadruple test offered at sixteen weeks gestation, but a 5% false positive rate remains inherent in the test results.  
 
Once the test determines that a woman is carrying a child with Down Syndrome, doctors often do not know how to relay that information.  Many parents of children with Down Syndrome share stories of doctors lamenting, “I’m sorry” or “I have bad news.”  One woman who decided she would continue her pregnancy spoke of her doctor reminding her that she could still undergo a late term abortion if the ultrasound indicated that the baby would need heart surgery (as many infants with Down Syndrome do within the first year of birth).  Children with Down Syndrome are particularly at risk for abortion, but parents of children with other disabilities also face tremendous pressure from health care providers to abort.
 
Effects on Babies with Down Syndrome 
Unfortunately, many families who find that they have a child who is “imperfect” choose to end that baby’s life through abortion.  About 90% of parents who find that their child has Down Syndrome choose to abort that child.  A parent’s concerns are often shaped by the exaggerated poor quality of life judgment predicted by the medical community, and these misrepresentations of life with a disabled or a child with Down Syndrome often determine whether that child is allowed to live.  Prenatal diagnosis is not a perfect science, and many times, unborn children thought to be disabled are born without medical complications or disabilities.  Additionally, health problems diagnosed early in pregnancy can often be resolved before birth.
 
This new test for Down Syndrome, coupled with the extremely high rate of abortion for babies with Down Syndrome, means that these children will likely grow up in a world with few people who are like them.  There are currently about 350,000 people with Down Syndrome.  With a diminishing population, many parents are concerned that there will be less institutional support and reduced funds for medical research.  
 
The New York Times also described a general unease about “drawing the line between preventing disability and accepting human diversity.”  One mom noted, “If all these people terminate babies with Down Syndrome, there won’t be programs; there won’t be acceptance or tolerance.” 
 
Support and Information
Many parents of children with Down Syndrome are convinced that more women would choose to carry their children to birth if they actually knew what parenting a child with Down Syndrome was like.  These parents are now taking a role in helping to offer a positive perspective in the face of daunting statistics and doctors who share only the difficult aspects of raising a child with Down Syndrome.  Volunteers are asking obstetricians to send parents to these experts on Down Syndrome when an unborn baby is diagnosed with Down Syndrome and before the parents make any decisions about terminating the pregnancy.  These advocates are also building networks so that new parents can meet with veteran parents of children with Down Syndrome for support.
 
Prenatally and Postnatally Diagnosed Conditions Awareness Act 
Both the U.S. Senate and House of Representatives passed legislation in 2008 to help reduce the number of abortions on babies with Down Syndrome and other disabilities.  This legislation requires that families who receive such a diagnosis (prenatally or up to one year after birth) be given facts about the condition and connections to support services and networks that offer assistance in raising a disabled child.  Regrettably, doctors will most often recommend abortion for these unborn babies.
 
Senator Brownback spoke from experience when he said:
 
It is difficult, sometimes overwhelming, for expecting parents to receive news that their unborn child may be born with a disability.  This legislation will help parents receiving such news by supplying them with current and reliable information about the many options available for caring for children with disabilities.
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