Our friend Jane shared this article with us soon after Nate was born. In light of all the advances in prenatal testing (which we hear is becoming safer and more accurate), we are faced as a culture and as a community to consider what this testing means for individuals with Down syndrome. Will we someday have a world without Nates?
This whole idea of prenatal testing feels a little like pulling a thread on a sweater. First we may be diagnosing Down syndrome prenatally, but down the road it could be the breast cancer gene or something else. It also makes me wonder about "designer" babies with pre-selected genes. Are we saying that there is more value in a certain kind of person or a certain kind of life?
On top of it there is so misinformation expectant mothers receive about Down syndrome. Unfortunately the medical community doesn't always give parents accurate and complete information about DS. Dr. Brian Skotko from Children's Hospital Boston reviewed research that showed a 15% decrease in births of babies with Down syndrome between 1989 and 2005 in the United States. Talk about airbrushing diversity! By no means are Eric and I advocating that prenatal testing not be done, or that other couples should make the same decision we did, but we do want medical staff to have accurate information about Down syndrome and a protocol for how they talk to families about what a Ds diagnosis really means in 2010. Things have changed a lot in the last 30 years!