We need to talk about the babies we lose and reeducate others about reproduction

13 January. It is a day that used to mean nothing. Now it is a day so laden with meaning and emotion I want to remember it always and strike it from the calendar all at the same time. It is a not-day. The day my twins should have been born. The day we should celebrate their birthdays. The day every year my husband and I should look at each other, and in our wonderfully cynical way that we parent, roll our eyes that we’ve survived another year with all three of our kids ruling our house like a little despotic kingdom right in the heart of the Midlands.

But that doesn’t happen. That will never happen, because instead of being born on 13 January, we lost them before we even got a chance to come to terms with the idea that we had twins to begin with.

Instead of 13 January we have 24 May. The day we lost the first one. And 30 May, the heart-breaking day we found out the second twin was alive but an ectopic pregnancy, putting my life in danger. And finally, 1 June, the day we ended the ectopic pregnancy to save my life.

Nobody knew those dates, until now, when I’ve told an entire readership of a global news website.

I have shared them because we need to talk about the babies we lose. We need to talk about it a lot. So much more than we do, and so much more than we even think we need to. As Baby Loss Awareness Week reaches its midpoint, we need to tell each other – publicly where possible – the important stories about what happens when you lose a pregnancy, a baby, a life you imagined as different.

Where do we start? I have some thoughts about where to begin on talking and what we talk about when it comes to baby and pregnancy loss. I wanted to share them today in the hopes of helping someone to start that conversation.

Teach about miscarriage and baby loss when we teach about reproduction in schools. Miscarriages occur at an astonishingly high rate of one in four pregnancies, giving them better odds of occurring than conception, and yet we rarely speak of them in sexual education.

Most students have little knowledge of what they are or why they might occur, growing up into adults who are none the wiser. Even with its low rate of around 1 per cent, stillbirths are still common enough that most people will meet or know one person in their lives who has had one. Why this fundamental part of reproduction gets so little airtime in education, for kids and adults, seems to be deliberately denying that these losses can occur. Not learning about them increases the shock when they occur and makes talking about them seem somehow implicitly taboo.

We need to normalise discussions and have photographic representations of loss. Love her or hate her Chrissy Teigen’s live tweeting of her own loss was like a rallying cry for those who have silently and invisibly mourned the loss of a baby. If she can post pictures to the world showing her pain and grief, then it is time to talk about the children we have all lost. Name the babies that never were. Share photos of babies gone too soon, of ultrasounds that never came good, acknowledge pictures of ourselves pregnant before we even got a chance to see what the baby might look like – sometimes this can just be a happy pregnant mum or an emerging baby belly.

In my case, the only picture I have from that pregnancy is of myself with my daughter and husband on a miniature train ride, enjoying ourselves as a family of five, just with two of the passengers on the inside. We thought all the pictures were to come, but they never did. That single snapshot is all we have.

Those supporting friends, families and co-workers through it need to know it’s OK to ask about the loss. Use the child’s name if they had one. Look at pictures if the parents will share them. Recognise that lost baby in the same way that you would have if that baby had lived. Love that baby like you love the living, happy ones in front of you.

Finally, a message to those parents who bravely share their experiences. We need to stop holding on to our stories of grief until we have another child. So many stories of miscarriage and baby loss only get told when the author can safely tell it with a new baby in their arms. When the grief is resolved by a new life that is so all consuming it pushes everything else out of your mind. That seems to be regarded by most as the “safe zone” to look back and talk about past losses. But for so many parents there is no resolution. For so many parents the first loss is the first of many, the canary in the mine that something is wrong and will continue to go wrong. It is the time when they discover a hard road ahead of IVF, adoption or childlessness. Many will never reach the “safe zone” when they can discuss their loss in the past tense, because their present is still not filled with new life. Many have empty arms and grieving hearts still.

My story is one of those. It remains hopeful but unresolved. I have no baby in my arms as I type this – and I do not know when or if I will again. What I do know is that if there is a horrible next time, I will not hide the story of that loss in the shadows. I will not blacklist days from my calendar. I will stand up tall to be counted among the many with important stories to tell about tiny footsteps on their hearts.

Dr Alexis Paton is a lecturer in social epidemiology and the sociology of health at Aston University, chair of the Committee on Ethical Issues in Medicine at the Royal College of Physicians, and a trustee of the Institute of Medical Ethics.