Discarding our treasures

In the past decade, births of babies with Down syndrome has fallen to levels 19% below the anticipated rate (Wortelboer et al, 2000). Birth prevalence of Down syndrome among the highest class have dropped significantly, whereas in the lower classes it has remained virtually unchanged. Thanks to utilization of technology to identify and abort babies with this condition, we have now made Down syndrome a phenomena of socioeconomic status (Khoshnood et al, 2006). In Australia, 75% of babies thought to have Down syndrome based on prenatal blood tests are aborted (Cheffins et al, 2000). The question is not whether or not this information should horrify and shame us as a society. The question is, how now to best support those parents who continue a pregnancy with a difficult prognosis? How to support these delightful children in our communities, as they become a rarity? And what of the children with other diagnoses that make them "eligible for termination", even in late pregnancy?? My own Amelia is one of them - she was diagnosed with spina bifida when I was 5 months along, and we were told we could terminate that day, without even the assurance of repeat testing. I post this here because I need a soap box to stand on! This came across my desk as I was researching preimplantation genetic diagnosis, and I am horrified, shamed, appalled, shocked, heartbroken. Here is one family's story of courage:

Cheffins, T., Chan, A., Haan, E.A., Ranieri, E., Ryall, R.G., Keane, R.J. et al (2000).
The impact of maternal serum screening on the birth prevalence of Down's syndrome and the use of amniocentesis and chorionic villus sampling in South Australia. British Journal of Obstetrics & Gynaecology: An International Journal of Obstetrics and Gynaecology, 107 (12), 1453-1459.
Khoshnood, B., De Vigan, C., Vodovar, V., Breart, G., Goffinet, F., & Blondel, B. (2006).
Advances in medical technology and creation of disparities: the case of Down syndrome. . American Journal of Public Health, 96 (12), 2139-2144.
Wortelboer, J.M., De Wolf, T.H.M., Verschuuren-Bemelmans, C.C., Reefhuis, J., Mantingh, A., Beekhuis, J.R., & Cornel, M.C. (2000). Trends in live birth prevalence of Down syndrome in the Northern Netherlands 1987-96 : the impact of screening and prenatal diagnosis. Prenatal Diagnosis, 20 (9), 709-713.