Ellis is not my great shame. He is not a secret I want to hide away. He’s one of the stars in my universe. Someone to be celebrated. His life mattered. He matters.

By R.M.

Two years ago we were expecting our third child. After a missed miscarriage at 13 weeks earlier in the year, we had gotten through what we thought was the risky part. As we inched toward our third trimester, we were excited and a little nervous to bring another baby into our lives. The 20-week ultrasound turned everything upside down.

I noticed it right away on the screen:  A large, dark spot in the baby’s brain.  We were told to call our midwife. She said it may be nothing, or a cyst, or an aneurism.  We saw a specialist who told us it was a brain tumour, and that we were expecting another boy.

Did you know that babies can get brain tumours in utero?

I had another month with him in utero, knowing that he would die. I made him a quilt. I knitted a baby cap. My friend knitted him booties. I went on leave from work. We spent the month seeing specialists, or contacting hospitals in Canada and the U.S. They all said the same thing. His prognosis was terrible, but they couldn’t give us any specifics. He might die in utero. His tumour might grow to such a size that it would kill me during labour. The tumour may not grow, but would definitely affect brain function. He may never see. He may never walk. He may not survive labour.  Because of the tumour’s position, it was not operable. If he survived, any care would be palliative. He probably wouldn’t live much longer.

People talk about choice, but it doesn’t feel like a choice to make this kind of decision. Do you want your baby to die now, or later? Do you want him to suffer? I never thought I would be making an end-of-life decision for my child before he was even born, but I did, and will live with it and my love for him for the rest of my days.

Ellis is not my great shame. He is not a secret I want to hide away. He’s one of the stars in my universe. Someone to be celebrated. His life mattered. He matters. I want to remember him with joy and love. Long limbs, tiny feet, a strong resemblance to his brothers. A little boy who would have worn glasses. A tiny being I will forever adore.

I feel lucky that I got to make this decision without judgement in a safe and funded hospital, under the care of a great team of doctors and midwives. I feel lucky that I live in Canada where this option was available to me.

At 24 weeks gestation, my labour was induced and Ellis was born. He did not survive the induction. We spent time with him holding him and kissing him and taking photographs. I wish we had spent more time together. I wish we’d brought a better camera.  I wish I had thought to read him the book I read my other boys when they came home from the hospital. I wish I had thought to give him a bath.

Two years in, my grief isn’t raw like it was in those early days. I don’t have as many triggers. I smile when I see pregnant women. I can talk about him without crying.  Sometimes I miss the intensity of the early days, when he still felt so close. When my body still bore marks of his having lived there. I’m still trying to make meaning out of this loss. I wish people would not ask me to have faith that this was meant to be — some great plan that’s too cruel to be written in the stars. I wished they’d never ask me to move on and leave him behind.