Nathanael's Story, by His Daddy

by Steve Wickham

We Knew it Wasn't Up to Us to Terminate.

As we paused to silently share some photographs we innocuously took that fateful morning—now nine months on, the tragedy done; our son, passed—there was a sense of the surreal, yes even now. We expect that we will never really know why this happened to us, and yet we are often told we were ‘chosen’. That doesn't sit very comfortably, I can tell you. Yet, people are only trying to help.

My wife, Sarah, and I took our then 15-month-old son with us to the Ultrasound rooms. It was July 1, 2014. A day none of us will forget. Another thing we will never forget is Ethan’s concern for his Mum and Dad as we cried on our way home. It was another eighteen days before we would find out our baby’s plight—amniocentesis confirming Pallister-Killian Syndrome (PKS), an incredibly rare condition affecting the 12th chromosome.

We were told at that early stage that our baby deserved “comfort and respect.” The looks on our geneticists’ faces when we said it wasn't our place to terminate spoke loudly, yet, respectfully they didn't say a word. They honoured what was the only thing we could do. We were praying for a miracle. So many people joined us praying that God might contort the formation of our little one’s internal organs, just so the lungs had room to develop. We had faith that anything could happen, and our role was to simply be faithful to our little life inside Sarah.

During the four months between diagnosis and Nathanael’s eventual stillbirth, we took many opportunities to take him out, to enjoy his movements inside the womb, to get to know our little boy. We treasured every memory we our imaginations could create. Our obstetrician nicknamed him a “cheeky little fellow” as he would often move suddenly during the eight amnioreduction procedures Sarah had—two litres of amniotic fluid were drained each week. Nathanael had lots of character!

When the time finally came for Nathanael to be born, our one and only hope was to meet him alive. Our expectation was that he would pass away quickly in Sarah’s arms. We were devastated when he passed away due to cord prolapse because of shoulder presentation during induction. We had grieved our loss well up until this point. The day after Nathanael was born, Heartfelt came in and took precious photographs for us. That night we sobbed and sobbed with Nathanael in our arms. But we had 179 hours with our little man until we said goodbye, finally, on November 7th.

We knew it wasn’t up to us to terminate. We felt an instant confirmation of this. We never doubted our decision. We received much peace, a peace that we cannot understand, I think, because we were resolute in the first instant. We stepped into our reality afresh each day and we were given the moment’s joy, procured by a very simple bravery to do what only we could do. Does any parent do anything less for their child?

Now we know that the experience we suffered is not just for us, but also for others, just as others’ experience sometimes give us encouragement. We have such a warmth in our hearts now for those who have lost a baby. We are connected through pain, and yet we are connected as sister and brother.

Nathanael will live on in our memory, forever!