Brian Stotko, Children’s Hospital Boston Clinical Genetics Fellow, Down Syndrome Program, wrote last week that a new, non-invasive test for Down syndrome is nearing reality:
But now scientists have learned how to quantify the fetal copies of the 21stchromosome, the genetic basis for Down syndrome, with a simple blood test taken in the first trimester. These tests would be safer, faster, and, most likely, cheaper than anything available today.
Because the current tests are invasive and are risky for the child, many parents choose not to test. But with this new test, Dr. Stotko expects that nearly every pregnant woman will know in the first trimester if her baby has Down syndrome. Dr. Stotko references the 92% rate for aborting these children using the current tests and asks the obvious question: will the births of babies with Down syndrome begin to decrease because of this testing?
Of course what he means is, will the decrease in births accelerate. With a 92% abortion rate, we are already experiencing a significant decline in the births of children with Down syndrome, even though many women choose not to test.
I am not against this new test; knowing things about a child before he or she is born can be very helpful in serving the child’s medical needs. I am against tests being used in a search-and-destroy matter. And I do not mean that from the perspective of parents. I am far more concerned about how doctors, medical systems, and insurers behave, because their current behavior generally is not in the interests of the children with Down syndrome being born.
Dr. Stotko addresses that issue as well:
Part of their decision will be based on the information they receive about Down syndrome from their medical providers. Yet, the majority of medical students argue that they get minimal education on children with intellectual disabilities; and nearly half of obstetric fellows claim their residency training is “barely adequate” to “nonexistent” in terms of how to counsel would-be parents of a child with intellectual disabilities. Some physicians who do routinely deliver a prenatal diagnosis also admit to purposely describing Down syndrome in negative terms. Not unexpectedly, then, many mothers feel that they receive inadequate, incomplete and sometimes offensive information about children with this condition.
I have no romantic notions that providing better education to doctors-in-training will turn this tide and create a whole generation of doctors who encourage mothers to let their children live. But I think it might help.
Closer to home, I wonder what the church will do. Will we stand for these parents and their children? Will we present a different view of disability to every member? Will we raise up a generation of doctors who battle for the unborn? Will we trust God to supply every need?
John –
Thank-you for addressing this article on your blog. I struggle to find words to respond to the issues raised by this doctor. Jonathan is one month away from his second birthday and I cannot begin to describe the joy he has brought to our family. I would not change a single thing about him even if I could – especially his extra 21st chromsome. He is exactly who God made him to be, with precisely the giftings God willed him to have. They may not be typical giftings, but they are God’s giftings to him and I will celebrate them. (And pray that the rest of the world will as well, instead of mourning the absence of the more typical gifts). As a parent of four children, I would say that his challenges are not greater than my other than my other 3 children. They are different, but not more or less. He walked at 1 1/2 years, feeds himself, plays trains and swords with his brother, reads with his sisters and smiles at everyone he meets. He attends the same toddler music class with me that his older siblings attended. The marginal challenges he has are so inconsequential some days I wonder what I grieved over when he was born. My greatest prayer: that the rest of the world (and especially our church community) would see Jonathan…see Jonathan…and see how he fits perfectly and purposefully into God’s kingdom. Oh, they would love him – you can’t help it – he is contagious that way. Jill
That sounds like a test that was offered to me when I went in for my first prenatal appointment. They are already offering it at Kaiser Permanente-at least in Southern California. My husband and I haven’t decided if we will do the blood test or not. We wouldn’t want to abort if our baby has a disability. So we are trying to figure out how it could be beneficial to know ahead of time. We trust in God’s beautiful sovereignty and would welcome any child with a disability that the Lord decides to bless us with-your picture of the beauty of it-through knowing God more-has helped me to even be able to say that. Thank God for the grace he has displayed through you and your family.
[…] is a focused horror. I’ve covered the issue of abortion and babies with disabilities many times before, but it isn’t limited to disability. Black babies are also targeted […]