Do you believe parents should have the right to hope that their babies might live?
Read the story of these twins born in Edmonton in 2019.
My sons were born healthy and strong, but young. Their little bodies were perfectly formed and so indescribably beautiful. Thunder was 10.2 ounces and measured 21 weeks and 3 days. Cloud was 12 oz and measured 22 weeks and 1 day; that is 6 days away from the 23 week gestational marker which would have qualified them for medical care. Instead, the medical team used Thunder's smaller measurement and classified them both at 21 weeks and denied them care.
I begged the medical team to help them. They told me there was no chance for them as their lungs were not developed. They implied that I was being cruel to want to save them as they would be in pain and have a zero percent chance at life. That's when we knew we would only have a brief time with them alive, so instead of arguing with the doctors, we decided to just enjoy our sons while they were with us.
We held them and watched them move, wave, and squirm. We also watched them struggle to get enough oxygen, change color, and die in my arms.
Thunder lived for 1 hour and 20 minutes.
Cloud lived for 1 hour and 30 minutes.
I wish I would have known then what I know now. I wish I could have told the doctors about the many babies born at this gestation who are now healthy children. I wish I could have shown them a picture of Ema and Luna who were born in Ontario at the same gestation and now are 2 years old. (See other babies who received care and survived!)
I wish I could have referenced the University of Iowa's Stead Family Children’s Hospital which has a 70% survival rate of caring for babies born this early. But even more so, I wish I didn’t even have to try to convince the doctors. I wish our medical system offered care to any child born alive.
Losing our sons is the most tragic pain I have ever experienced. Now knowing that they may have been able to survive if they had received care, is a new, deeper, unjust pain that I can’t describe. It causes me ongoing agony to know that at a different hospital, or with different doctors, maybe our sons would have received medical care. I watched my sons try to breathe, try to stay alive. I just wish the medical team had tried too. I could accept their deaths more easily if at least some attempt was made. But to watch your children die and no one is doing anything…oh that pain is an overwhelming, helpless, nagging pain that grasps my heart, my breath, and many times, consumes my whole being.
I share our story in honour of our sons who I carried for 22 weeks and who I will love for a lifetime. I hope no one ever again watches their infants die while they ask for help and receive no care. Babies have the right to medical assistance like anyone else, and parents should have the right to hope.
In honour of our sons, and the growing number of children who survive 21 and 22 week births, I call our medical system to a higher standard of practice that offers care to any baby born alive.
Photos taken and provided by Sonia and Roy
Update: We hired a policy analyst to find out how this could happen in Alberta. Read our report and view our policy recommendations here.