"I woke up to my baby face down in his cot. The horror, the chaos, the falling to the bottom of the earth."

This article deals with an account of infant loss that could be triggering for some readers. For support, please call Red Nose Grief and Loss on 1300 308 307.

People often say that you don’t realise how lucky you are. I did.

I did, because after losing a little girl late in pregnancy and then, a year later, being told that my beautiful three-day-old baby girl, Charlotte, was probably not “going to last the day out”, I realised with acute clarity that I was one lucky mum to be here, almost two years later, with three beautiful children – four-year-old Alexander and almost two-year-old twins, Damien and Charlotte.

And then the world shook.

I woke up on Thursday March 14, 1991, to my beautiful Damien, face down in his cot. Dead. The horror, the chaos, the falling to the bottom of the earth. The searing pain and the absolute unreality of that morning and countless mornings thereafter are indescribable. It is a place I prefer not to go because it makes my life unbearable.

And that is, I think, how one copes with immense grief. You learn to cover it in your heart, day by day, layer by layer. You learn not to visit it, because when you do it robs you of your breath.

It is wrong to say that “we are only given what we can manage”, because we don’t manage. Parents like us move from one day to the next, fulfilling the minutia of life ensuring our living children, if we are lucky enough to have them, are kept safe and healthy.

It took me a long time to get used to the fact that my gentle Damien, with his big brown eyes, was never coming back. As odd as it sounds it took me until what should have been his fourth birthday to come to terms with this. I know this is weird and I can’t explain it, but with that realisation other things came as well. I realised that even though I had not wanted to live, I was alive, and even though I was heartsore, I had a choice. From that day on I could choose between living happy or living sad. I chose the former. Even though this sounds straightforward it was not.

When something as tragic as the sudden, unexplained death of a baby happens, so many loving and supportive family and friends want to help you “get over it”. After a certain time period they start encouraging you to get on with your life. These well-meaning people only want the best for you. But they have no idea that it is impossible to get on with a life that you no longer recognise as yours. I had thought of myself as the perfect mum, but who was I now?

Despite this crippling confusion, I wanted to please those around me and so I continued on the trajectory of my former life. I did make subtle changes though – while I was a lawyer by day, on nights and weekends I would spend hours in the library researching SIDS - Sudden Infant Death Syndrome. This was not difficult for me as early in my career I had trained as a biochemist. As I delved into what was known about these beautiful babies it became clear to me that there was good evidence that something was fundamentally wrong, but it was so subtle that we could not detect it, as yet.

I spoke to family and friends about the idea of moving into SIDS research, but only my mother thought this a good idea. So, I continued to try to stay on the trajectory that others thought best.

I tried so hard that one day, three years later, when I was visiting my friend, I said nothing when I saw her baby, Amelia, sleeping on her tummy in the pram. I did not respond to the screaming voice in my head to tell her to never sleep her baby on her tummy. I was trying to get on with my life, I did not want to upset her and so I said nothing. The next morning, sitting in my office, overlooking the harbour, I got a phone call. Amelia had died in her sleep during the night.

That afternoon I resigned from my job as a lawyer and returned to the world of medical research. I made a solemn resolution there and then to leave no stone unturned in my quest to solve the mystery of SIDS.

This decision, though, had consequences and sadly caused even more pain for my children. My marriage broke up and overnight my children and I were plunged into the world of single parenting, with all the financial and time pressures that brings. I found myself doing paid work by day and once my children were asleep, a friend would come to babysit, allowing me to go to the hospital to study sleeping babies.

I am still amazed by the tolerance of my children in those busy years. Despite their youth they were so very supportive and never complained about the many hours I devoted to study and research.

Twenty-five years after I began my research, our understanding of SIDS has come a long way.

We now believe that some babies have a deficiency in their ability to wake from sleep, which puts them at risk of SIDS, and we think we may be on the cusp of developing a way to test which babies are vulnerable. This could be revolutionary – imagine if we could test babies to determine if they were more at risk and could then take steps to keep them safe?

I don't want another mother to go through what I have been through, so I'm determined to keep working towards understanding why this devastating thing occurs.

But our research team has run out of funding, so we are turning to the parents of Australia to ask for your help. I am confident that the power of the community can solve this awful problem. If every parent in Australia gave just $2 we would be well on our way.

Your donation is for every child because every child deserves to sleep safely and wake up again.

Strictly speaking Damien’s death was not SIDS but SUDC – Sudden Unexplained Death in Childhood. While this is rarer it accounts for an important fraction of unexpected deaths in children over the age of one.

To donate to the incredible research being conducted by Dr Harrington and her colleagues at Children's Hospital Westmead and Sydney University, visit the Damien’s Legacy My Cause page. Every dollar helps.

If this article 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.