'When my baby passed away, strangers on social media helped save me.'

This post deals with infant loss and might be triggering for some readers.

Trust in social media has fallen recently. Facebook’s move in response to the Australian Government Media Bargaining code backfired, fake news continues to be peddled, and trolling and cyber abuse are in the spotlight nationally. 

A lot of us are tired - of the humble bragging, the bullying and the incessant news cycle. It's easy to think that it's time to disengage from social media altogether. 

But I don't think we should. I have seen the worst side of the internet in my work as a cyber security expert: the vitriol, the abuse, even the creepiest corners of the dark web first-hand. 

I have also been exposed to it as a baby loss mother.

Watch: A tribute to the babies we've lost. Post continues below.

Three years ago I started a charity, 'The Lily Calvert Fund' (LCF). LCF was set up in memory of my baby who died from an incurable brain disease. In this role I talk about grief and paediatric palliative care, and for unknown reasons, these deeply personal topics can attract trolls.

Despite that, I will not be renouncing social media and I do not think other Australians should either. Let me explain.

Lily died when she was 10 months old. After her death, my husband and I were surrounded by supportive family and friends, but we were lonely and isolated by our loss. It's hard to comprehend how life-changing grief is unless you have experienced it.

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A post shared by Priyanka Saha | Melbourne (@the_lilyflower)

We didn't know anyone who had lost a baby from Miller Dieker Syndrome (MDS). Nobody in our friendship circle had nursed a baby to her death. Nobody lived with the trauma of watching their child suffer from hundreds of seizures a day.

About two months after Lily died, I joined Instagram. One night, as I lay in bed scrolling, I found a woman in Washington State USA who had lost her baby from MDS too. Then another popped up in New Zealand, another in Japan, and another in South Africa. 

MDS is a rare disease with reported cases estimated at 1 in 100,000. Speaking with others who had the same experience was a turning point for me. 

Slowly, sadly, our online army grew. Technology allowed us to connect and share. We welcomed new families to our little club, lifting them up, keeping them safe in their sorrow. 

We lived in opposite corners of the globe, but every day we checked in with each other. Some days we talked for hours. We grieved together. United by our trauma, the connection was instant. We could be honest and speak without judgment. The grieving we did together, it felt like a kind of work. It was necessary to our survival. Anyone who has experienced a great loss will know that in the beginning, staying alive - and maintaining a shred of sanity - is everything. 

Now almost four years on, I don’t need those daily conversations, but the love and gratitude I feel towards the people I met online will last a lifetime. Even if we never meet IRL. 

Plus, I have a digital support group that is there for me whenever I need it.

I spent a lot of my time in those early days in two different ways - either in bed staring at a wall, or wildly productive - planning elaborate fundraisers and launching new projects. I later learned that my extreme productivity was a side effect of post-traumatic stress. It was pent-up energy previously dedicated to caring for Lily, with nowhere to go. I harnessed it and I am grateful that social media helped me to do that in a positive way - plus, scrolling Instagram seemed healthier than staring at a wall for hours. 

Some women reached out to me wanting to help. They owned a business called Tiny Tones Musical Instruments. Together we launched a national program, the LCF Music Therapy Kits for paediatric palliative care. It will expand to New Zealand this year, and aims to share music therapy with all children in palliative care. Because music was Lily’s favourite. It brought her, and our family, so much joy. 

I shared about LCF on social media and received messages from parents daily who said that reading our story helped them to cope with similar diagnoses, and for those who hadn’t suffered a great loss, to support the friends that had. 

After a few months I starting connecting online with parents of living children, and parents of children with a life limiting diagnosis. When I was first told Lily would have severe disabilities and ultimately die, I wanted nothing to do with the special needs community. I am ashamed to say that I despised them, as they represented everything that was wrong in my life. Now, I am proud to be part of a community of the fiercest advocates; the strongest people I have ever met. 

I am so grateful for their support and inclusion of me, even though my darling Lily is no longer here.

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A post shared by Priyanka Saha | Melbourne (@the_lilyflower)

Today I am actively in contact online with thousands of parents. We share advice on how to cope with the shock of being told there is no cure for your child, we discuss how to know when your child’s death is actually imminent (yes, really), and how to document those last few days. 

There is no right way, of course, but professional photos, finger and hand imprints and plaster casts of little hands and feet are items that will be treasured forever.  

We talk about terrible things, things no parents should have to consider. Like 'Do not resuscitate' orders, and how to decide when a life-saving intervention is no longer appropriate.

Just like the support others gave me, I do my part to help new parents have the confidence to advocate for their children. We send cautious congratulations when one of us is pregnant, mistrusting of a happy outcome until birth (and subsequent checks prove it so). Together we traverse the terrifying nine months of pregnancy after loss. We support each other, discuss the benefits of genetic testing, and how to manage our mental health.  

We celebrate when one of us finally holds a living baby in their arms. I weep tears of joy. I cry for people I have never met in the flesh, babies I will never see. Championing their very existence through the internet. My love is genuine and real. 

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A post shared by Priyanka Saha | Melbourne (@the_lilyflower)

Without social media, I might still be lying in my bed staring at the wall.

Instead, I have a community of supporters, a national charity program in my daughter's memory, and I feel that I can genuinely make a difference to other families. 

Social media has given me a purpose and a strength that I could not have imagined in those early dark days. 

That is why I do not believe Australians should give up social media. It has an incredible power to connect those who need it most, to soothe our grieving hearts, inspire charitable ideas, and to help us feel less alone. 

So don’t press the deactivate button just yet. You never know when you might need it most. 

Priyanka Saha is Lily and Jasper’s mother, a lawyer, charity founder and runs cyber security consultancy Resilience by Design Group. She manages the Instagram account @the_lilyflower and is the chair and co founder of @thelilycalvertfund. You can learn more about the LCF Music Therapy Kits and how to access or support the program at www.lilycalvert.com and www.tinytones.com.au.

If this has raised any issues for you or if you would like to speak with someone, please contact the Sands Australia 24-hour support line on 1300 072 637. 

You can download Never Forgotten: Stories of love, loss and healing after miscarriage, stillbirth, and neonatal death for free here.

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Feature Image: Instagram