On Monday, I learned that a friend of a friend gave birth this week to a girl – a baby with Down syndrome (I’ll call her “C”); the family didn’t know about the extra chromosome in advance. A few years ago, I would probably have thought, “Oh, that’s too bad. I’ll pray for them.” Instead, I thought, “That’s great news! They are so blessed!”
When I heard about C, I was taken back to the first few days of Nathan’s life – the fear, the talks with family and friends, the prayers, and the relief. Relief that his heart was fine. Relief that he was healthy. Relief that it was “only” Down syndrome. Relief that I hadn’t known beforehand so that I didn’t spend day and night for months on end worrying.
My friend shared a photo of C and her family with me. In the image, C, both of her parents and her two older siblings are dressed in pink.
They are a happy, smiling family.
On Tuesday, Mr. Andi and Sarah Kate had lunch with a friend (I’ll call him “F”). F lives out of state, but comes to Mayberry regularly. I stopped by to pick Sarah Kate up and talked with F for a few minutes. Last year, when F’s wife (I’ll call her “S”) was pregnant, the baby was diagnosed at 22 weeks gestation with a blood disorder, thalassemia major, an inherited form of severe anemia. F’s wife was told to come in within 24 hours to discuss the results, and upon arriving, she and F were immediately offered an abortion. Not only was it offered, but F and S felt pressure to abort right away, without taking the time to do their own research and soul-searching.
F and S declined the abortion.
Although they were told that their son would never be healthy and that he would die within the first few years of life, they soldiered on. Mr. Andi and I thought of them often during the pregnancy and prayed that they would be able to face whatever came along with grace and love. We saw them back in February, when the baby was just a few months old, and listened to F talk about the laundry list of problems they’d had with medical insurance since the baby’s file had been labeled with “thalassemia major.”
But the story doesn’t end there.
Upon further testing since his birth, the experts have now concluded that although F’s son does have thalassemia major, he also has a unique combination of other genetic factors that, in shorthand terms, will counterbalance the effects of the thalassemia. The result? Their son is expected to live a completely normal, healthy life.
F and S had prenatal testing; that testing was used to pressure them into an abortion. Thankfully, they declined, and today they have a healthy child. Their biggest obstacle since his birth has been for health insurance, all because he was labeled in utero with a deadly condition that, as it turns out, is expected to be completely benign.
I don’t know if my C’s mother declined prenatal testing; all I know is that she didn’t know in advance that her baby would be born with Down syndrome, and because she didn’t know, she likely wasn’t encouraged to abort C due to the diagnosis. She wasn’t placed in the position of having to trust doctors to know what was best for her family.
Prenatal testing is beneficial if it’s used to help prepare for a birth that could have complications. But the information that these tests provide is but a tiny sliver of reality. Despite all of the advances in modern medicine, doctors still know very little. Even if the information obtained is true, it can’t provide the whole picture of the person. A blood test doesn’t describe what it will be like to love and care for that baby with a congenital condition. A blood test doesn’t show you the void that will be left if that baby is never allowed to be born.
Doctors do wonderful things for people – I don’t deny that. We’ve been blessed with (mostly) good experiences with physicians. But a geneticist in a laboratory won’t live your life for you when you leave his office. He may know a lot about karyotyping, disease risk factors, and life expectancy, but those things are but a small shadow of a person – just a blip on the radar of a life.
Doctors don’t deserve to decide who lives and who dies – or who is allowed to be born.
Tell me what you think.
This post is part one of a two-part series on prenatal testing. Part two, The Good News About Prenatal Tests for Down Syndrome, will be published on June 14.