real life

'We had 10 precious months and 15 days with our baby girl. Then our world fell apart.'


Two years ago my baby died of a rare brain condition known as Miller Dieker Syndrome.

Only two babies every year in Australia are diagnosed with this condition. I had a healthy pregnancy until an ultrasound at 36 weeks revealed a problem. It was the day my life changed forever. My husband and I were told we might have two years with our child, if we were lucky.

Devastatingly, we were robbed of even that. Lily died when she was just 10 months and 15 days old. Since then, I am a different person, I have different beliefs, a different outlook on life. I am still figuring out how to survive without my child.


One of the hardest things I have faced is the expectation from society to get over it. At least, to stop talking about it in public.

I remember a friend asking when I was going back to work, only a week after Lily died. I was shocked, my baby had been dead for just days and already there was an expectation to get on with life.

This question was just the beginning. Two years on I feel a definite sense that I should be ‘over it’.

‘Why does she keep going on about it? Do you think there is something wrong with her?’ I hear a lady I vaguely know, whisper loudly across the café. Her friend looks away awkwardly as I make eye contact.

I ignore it, because although it hurts, it is not a surprise anymore. There is an unspoken expectation within society that exists. That we, the grieving, should stop talking about our deceased. That there is something wrong with us if we don’t.

We see the little looks, the hushed voices. The judgement.

I know I am not alone in this feeling. I’ve had thousands of other baby loss mothers agree that they feel it.


Pressure to stop talking about their babies. But why? Who does it serve to keep silent? The truth is, talking about our children allows us to ‘heal’. It allows us to process and accept that our babies are no longer here.

It lets us keep them close and alive in our memories. Stifling that conversation only makes things worse.

We talk about them to remember them. To keep their faces, their names, their spirits alive. We talk about them because we love them and time cannot lessen that or silence us.

We talk about them because in the year 2020 we recognise that it is healthy to do so. We recognise that grief is not a mental illness. There is nothing ‘wrong with us’. In fact, I have learnt that being able to speak freely about my baby is paramount to my mental health.

Why do I do it so publicly? Because there are hundreds and thousands of us, feeling so damn isolated. So lonely in our loss. Yet we are not alone.

We are everywhere, and thankfully we have a growing network. I still remember being stunned the day I found out there were hashtags for baby loss. ‘There are other people online like me?’ I wondered.

I couldn’t believe it. I went onto social media and I found my tribe. Mothers from across the world on the same timetable of grief as me. Parents who were desperate to share photos of their babies. Desperate for others to say their children’s name, to share in the joy of their existence.

Talking about our children helps others who have experienced loss. Recently my elderly neighbour came over to introduce herself. I reminded her that we had met before and she replied confused.

‘But didn’t you have a baby girl called Lily?’


I explained what had happened and to my utter surprise she broke down. She told me about the baby she had born 40 years ago who had died just days after birth.

‘We weren’t allowed to talk about it back then. But I still think about my baby every single day. If I can give you any advice – keep talking about your girl. Don’t let them shut you up’.

So I will continue to talk about Lily. Because she is my child and I am her mother. Because when I talk about her it helps others talk about their loss. If talking about it in a public forum can reach just one person and help them feel less alone, it is worth all of the judgement.

So next time you hear someone say ‘Why does she keep talking about losing her baby?’

Please tell them, ‘She talks about it because that was her child. She talks about it to help others talk about their loss. She talks about it because it’s normal and healthy to do so’.

Priyanka Saha’s baby Lily, died aged 10 months old of a terminal brain condition in 2017. Prior to having Lily, Priyanka she also suffered a traumatic and life threatening ectopic pregnancy. After Lily died, seeing how little support was available to people, Priyanka wanted to use their experience, to help others. Together with her husband she set up The Lily calvert Foundation. Priyanka started writing about her grief on an Instagram account called @the_lilyflower. She shared her experience and her following quickly began to grow, with parents drawn to her candid words.

Priyanka is a lawyer and policy adviser. She has a master’s degree in conflict and dispute resolution, and is a qualified conflict coach, helping others find reconciliation and peace from trauma. She brings her expertise to provide unique commentary and advice on surviving life after loss.