Please Be Balanced: A Parent's Ask of Healthcare Professionals

In October, 2003, a study published in the New England Journal of Medicine, received a lot of publicity. This study suggested that a blood test combined with measurements of the neck-fold of a fetus by means of ultrasound during the first trimester of pregnancy would allow detection of babies with Down syndrome (trisomy 21) and another chromosomal disorder called trisomy 18 (Wapner et al., 2003). One article in a magazine in a clinic waiting room explained how this approach now allowed the detection of Down syndrome at a very early stage of pregnancy (Warwick, 2003). To me, the title and tone of the article was encouraging and almost celebratory in the manner in which it talked about the benefits of such testing. Prenatal blood screening has reduced the birth incidence of Down syndrome in many places by about 50%. When blood screening reveals an elevated chance of having a child with Down syndrome, women proceed with further testing like amniocentesis or chorionic villus sampling. This means that many women and their partners choose to end their pregnancies when testing results reveal their unborn child has Down's. By failing to be explicit, people who do not understand that Down syndrome is a chromosomal abnormality, can be left with the impression that if detected before birth, the condition can be "fixed". In this article, along with others I have read, there has been no exploration of what comes after learning the results of testing, especially when it reveals a problem. No information has been provided on what support families receive in making the difficult decision of whether to continue or end the pregnancy.