Anencephaly is a type of neural tube defect in which part of the brain and skull do not develop. Children with anencephaly are born with a devastating prognosis, with most children dying at best within hours or days of birth. This is an extremely challenging diagnosis to receive, and many parents choose abortion after finding out about their children’s severe birth defect. That knowledge that abortion may be presented as an option or perhaps as the only option is partially responsible for why many Christian parents opt out of prenatal testing.
Prenatal testing as a term can mean any number of things. It can refer to ultrasounds at various points in gestation. It can refer to blood tests for various biomarkers or for fetal DNA. It can refer to amniocentesis and chorionic villus sampling. These procedures run the gamut from risk free to carrying a risk of miscarriage. They have different false positive and false negative rates, test for a variety of conditions, and in some cases (such as spina bifida) allow for treatment to occur before a child is even born.
Many times parents of faith reject some or all of these tests out of hand. “I would love my child and want him or her regardless, so why would I want to have to explain to a doctor that abortion is not an option for me?” “I would rather see a child before a diagnosis.” “It won’t change anything, and sometimes the tests are wrong. If the tests are wrong and I can’t change it anyways, what is the point?”
And yet, without prenatal diagnostics, Shane has no bucket list. Prenatal diagnosis gave him and his parents the chance to love more fully instead of less, to love with heart and eyes wide open. The chance to run from such a hard and painful knowledge to hope. To make a bucket list. To celebrate life fully in the knowledge that our children are not our own, but merely entrusted to our care.
God gave them Shane, their irreplaceable child, in whose face they see the Risen Christ standing at the threshold. Science gave them a diagnosis. Faith and science informed by each other gave Shane a bucket list. A list of memories. A list of hope. An authentic pro life witness in a time and place that says that some children are not worth the having, that some people are not worth the pain it will take to say goodbye.
Happy birthday, blessed boy. And blessed be the parents who gave you life. We are an Easter people, and Alleluia is our song.
A later post will work through the pros/cons and some of the misconceptions of prenatal testing. To follow along with Shane’s story and wish his parents well, please visit the Prayers for Shane Facebook page.
Edit: Born on earth at 2:55am, baptized a Catholic, Shane died enrobed in love at 6:15 this morning. Peace, hope and love to his parents.