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It Wasn’t Up to Us to Terminate

As we paused to silently share some photographs, we innocently captured that fateful morning – now nine months later, the tragedy is over; our son passed away – there was a sense of the surreal, yes even now. We expect that we will never really know why this happened to us, yet we are often told that we are “chosen”. It’s not very comfortable, I can tell you. Still, people are just trying to help.

My wife, Sara, and I took our then 15-month-old son with us to the ultrasound. It was July 1, 2014. A day none of us will ever forget. Another thing we will never forget is Ethan’s concern for Mom and Dad as we cried on the way home. It was another eighteen days before we found out what was wrong with our baby – an amniocentesis that confirmed Pallister-Killian Syndrome (PKS), an incredibly rare condition that affects chromosome 12.

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 interrupt spoke volumes, but respectfully, they didn’t say a word. They respected what we could only do. We prayed for a miracle. So many people joined us in praying that God would warp the formation of our little one’s internal organs, just so the lungs would have room to grow. We believed that anything could happen, and our role was to simply be true to our little life in Sarah.

During the four months between diagnosis and Nathanael’s eventual stillbirth, we took many opportunities to take him outside, to enjoy his movements inside the womb, to get to know our boy. We treasured every memory our imaginations could create. Our obstetrician nicknamed him “cheeky little one” because he would often jerk around during the eight amnioreduction procedures Sarah had – two liters of amniotic fluid were released each week. Nathanael had a lot of character!

When the time finally came for Nathanael to be born, our only hope was to meet him alive. We expected him to die quickly in Sarah’s arms. We were horrified when he died of cord prolapse due to shoulder presentation during induction. By this time we had mourned our loss well. The day after Nathanael was born, Heartfelt came and took precious photos for us. That night we sobbed and sobbed with Nathanael in our arms. But we had 179 hours with our little man until finally, on November 7, we said goodbye.

We knew it wasn’t up to us to stop. We felt instant confirmation of this. We never doubted our decision. We got a lot of peace, a peace that we cannot understand, I think, because we were determined in the first moment. Each day we stepped anew into our reality and were gifted with instant joy, gained by the very simple courage to do what only we could do. Does any parent do anything less for their child?

We now know that the experience we have endured is not only for us, but also for others, just as other people’s experiences sometimes encourage us. We now have such warmth in our hearts for those who have lost a baby. We are connected through pain, yet we are connected as sister and brother.

Nathanael will live in our memory, forever!

© 2015 SJ Wickham.

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