“All we have to decide is what to do with the time that is given to us.” – Tolkien
I am so angry today, so very, very angry.
We were incredibly lucky with our medical team. Being here in Asheville, having a fairly newly established pediatric palliative care team, and a great obstetrician – we were able to bring James into the world safely. We were given 5 wonderful months with our beautiful son. No one pressured us to make the decisions that we made. We were guided and supported all along, no matter what we decided. Our team saw James for what he was. Our son. He was not a medical diagnosis. He was not a burden or problem. He was a baby. Yes, he was medically complex, but he was still our baby boy.
A few days ago, a fellow trisomy mom posted on our Facebook group. She was 35 weeks pregnant and had noticed decreased movement of her baby. This was her first baby, and she wasn’t sure what was normal. She went into her doctor’s office for a check. The baby’s heart rate was 100. This is low. It was low the entire time that she remained at the doctor’s office. The doctor expressed this to the expecting mother. And then he SENT HER HOME. He told her that he wasn’t concerned. He did not recommend a non-stress test or a biophysical profile or anything else that would’ve told them if the baby was in distress and needed immediate intervention.
He told her that he “wasn’t worried” and sent her home.
Her baby died in utero within 48 hours.
This mother will never hold her living child because a doctor did not see the value in intervening for a child that is considered “incompatible with life.” He robbed that mother of the chance to hold her baby – to see his eyes, hear his cries, feel his heart beating against hers.
I believe every mother and father faces a choice when given this diagnosis. And I believe that choice is theirs to make and theirs alone. Whatever the choice is, it’s not mine or anyone else’s to make. It’s gut-wrenching. There is nothing like it. We were lucky in that no one tried to pressure us in any way when we learned of James’s diagnosis. We had a great medical team. We knew what we wanted – to hold him alive, for however long he could be with us.
Today, my heart hurts for this mother who will never see her son’s bright eyes. She will never hear his voice. She won’t have the memories of holding his warm body against her. This was stolen from her because someone else judged the worth of her child.
Chromosomes don’t determine the worth of a child. My son was beautiful. He touched the lives of so many around him and across the continent and in other countries. He brought joy and happiness to his family – both while he was here and after he left us. I would never choose it any other way, and I am glad that our medical team helped us realize that dream.
If only everyone were so lucky.