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.
A college friend of my wife just announced that their 21 month old daughter was diagnosed with a very rare form of neuroblastoma with additional complications. Nothing prenatal testing could have done would have predicted this. Chances are she’ll survive the neuroblastoma but because of the complications, it is likely she will have serious neurological and developmental delays.
Where do we draw the line? It’s ok to abort a child who may have a difficult life prior to birth, but should we withhold treatment from this little girl because saving her life means a difficult life after the fact? The mere suggestion of this would cause an outrage. But why is this any different than suggesting abortion to a mother whose child is potentially destined for struggle? Aren’t we all destined to struggle?
You know I struggle with the topic of abortion rights, for a lot of reasons. I do believe a woman’s right to choose whether or not to continue a pregnancy is the unfortunate flipside to the coin that allows me the option to pursue IVF if I so choose. And I know you and I differ on that. I also believe a woman who is raped should be allowed the privacy and safety to decide whether or not to continue a pregnancy that results from an attack. I believe a woman whose life is at risk by continuing a pregnancy should be allowed to survive.
What I do not believe in is the right of a doctor to tell a woman to terminate a pregnancy because a child is less than his/her idea of “perfect.” What I do not believe in is the blatant eugenics practices by physicians in the name of medicine that results in perfect but different children never taking their first breath. This isn’t even an issue of abortion rights in my opinion. This is an issue of medical ethics. It is unethical for a doctor to encourage termination, unless the mother’s life is at risk. Period. Beyond that it is the job of the doctor to inform so the parent(s) can make the decision for themselves. That’s what is meant by informed consent. But how can a parent make a decision when doctors give misinformation and lies? It’s time someone starts to hold doctors accountable for the information they give.
Completely agree with your final point. I do have to say though that I was SO thankful for prenatal testing that told me in advance. My personality is such that having that extra time to grieve, accept, process before my baby was born was invaluable. I will say thought that I only went for further testing after the ultrasound screening showed abnormalities. Thankfully, while abortion was certainly offered, we were not pressured. (it wouldn’t have mattered if we were – abortion was not an option.) The most beneficial thing about knowing in advance is that literally hundreds of people prayed for the safe delivery of our baby and were able to share in the joy of her arrival and see God’s hand at work. Most importantly, I feel, that time was so strengthening for my own personal faith as I learned to lean on God for strength & peace despite an uncertain outcome. I only share this to emphasize that each person and their experiences are different and can be used by God for good.
As someone with a progressive degenerative condition, I often think about the world we live in. In our world choices are not only available for in-utero testing, but we can also contemplate pre-implantation genetic screening IVF procedures which enable us to screen out embryos and eliminate passing of diseases to our (potential) children.
It is a tough ethical debate.
And for those that have children with genetic abnormalities and conditions… Isn’t it repugnant that only recently ongoing health care in the US associated with genetic pre-existing conditions could be denied – simply by changing employers or insurance policies we could lose our care?
A tough post – and question – on so many levels. Thanks as always for sparking thought.
My wife and I decided against prenatal testing for our children’s sex and health conditions. We believed – and still believe – that we had to trust God to send us a child that He would give us the grace to raise. To try to second-guess Providence is close to blasphemy in our opinion.
Wow- You’re asking some tough questions and I appreciate that. You’re right in that it’s really the sum of the parts – the medical info, the families beliefs, the ability to get useful information and help, and should never be a doctor directed decision. I feel nothing but compassion for women who choose to abort in these situations because of fear/lack of info/emotional trauma, whatever. That’s a heavy decision.
At the end of the day I celebrate what you do here for this very reason – I believe it’s in telling our stories, sharing our hearts and the fullness of our children’s lives, that we can show the bigger picture and possibly give someone else hope. Someone may have an in utero diagnosis of whatever and be able to see what that life really looks like instead of just medical words on paper.
Thank-you for sharing.