Penny will "graduate" from pre-school today. She'll sing songs and receive a diploma and give hugs to her friends and her teachers. And we'll feel a little silly that we're sitting through a pre-school graduation and a little nervous that kindergarten comes next and very proud of our little girl.
And we're not alone. We're not alone in a general sense–tons of parents feel silly and nervous and proud of their 5-year-olds. But we're also not alone among parents of children with Down syndrome.
And yet there is a pervasive sense among people within our culture that people with Down syndrome are undesirable or even that they are better off never being born. I read it all the time, the news that "85-90% of babies with Down syndrome are aborted." But it's a bit more complicated than that, and it's important to recognize that more families are willing to welcome a child with Down syndrome than the numbers suggest.
In actuality, 80-95% of pregnancies with a prenatal diagnosis of Down syndrome are terminated (a meta-analysis concludes that 92% worldwide are terminated), according to studies provided to me by Dr. Brian Skotko of Children's Hospital Boston. Prenatal diagnosis means that a woman has chosen to have an amniocentesis, the most reliable way to determine the chromosomal makeup of a fetus. (Note, I say "most reliable" because amnios are still sometimes wrong. I just met a woman whose mother was told, after two amnios, that she would have Down syndrome. She doesn't. I also have a friend who was told that her daughter had a missing first chromosome and would die in utero or shortly after birth. Her daughter was born with Down syndrome but not with an absent first chromosome. She's a healthy and happy 6-year-old now.) Many women elect to have prenatal screening tests, but, according to Henry Greeley, writing for Nature (January 2011), only 2% go on to have an amnio. As a result, most babies born with Down syndrome were not prenatally diagnosed.
On the one hand, this is good news. Presumably one of the reasons that women don't get an amnio is that they wouldn't terminate the pregnancy even in the case of Trisomy 21 (aka Down syndrome). Or, to put it another way, the group of women who do choose an amnio may be somewhat self-selecting for abortion. (Of course there are other women that choose an amnio in order to be prepared ahead of time. The majority of my friends with kids with DS had a prenatal diagnosis and continued the pregnancy.) Furthermore, the fact that so many women don't receive a prenatal diagnosis and don't terminate their pregnancies means that the number of children born with Down syndrome has actually increased slightly in recent years (without abortions due to prenatal diagnosis, however, it would have increased much more in light of the fact that more women are having babies later on in life).
The reason I'm drawing attention to the fact that so many children with Down syndrome are not aborted is that I want women who opt out of prenatal testing or who choose to continue a pregnancy with a prenatal diagnosis or who give birth unexpectedly to a child with Down syndrome–I want these women to know that they are not alone. Thousands of other parents are in your shoes. Thousands of other families have made similar choices. And hundreds of thousands of individuals can testify to the goodness and purpose in the lives of their friends and family members with Down syndrome.
In writing all this, I don't mean to ignore the cultural reality that many people do not want a baby with Down syndrome and, furthermore, many of those people choose abortion as a result. Moreover, advances in prenatal testing suggest that women will soon be able to receive a prenatal diagnosis much earlier in pregnancy and in a much less invasive manner than an amnio. These advances suggest that more and more women will find out that their children have DS much earlier on and that more and more pregnancies will be terminated as a result. Offering accurate information to these women and to their doctors is crucial in helping to create a culture that cares for and includes individuals with Down syndrome rather than assuming it would be better if they never were born.
I hate the thought that there will be fewer people with Down syndrome in the world as a result of advances in prenatal testing. As I've written before, it impoverishes us all when we selectively abort babies based upon particular characteristics (gender, for instance, in China and India... disabilities here in America). But I also hate the thought that mothers of children with Down syndrome think they are alone. Yes, some women choose abortion when they see a karyotype with three 21st chromosomes. But many other choose life.
