I was blessed to with three beautiful children – Alexander, now 32, and younger twins Charlotte, now 30, and Damien. However, while Alexander and Damien were two healthy and happy babies, Charlotte was born with health issues and her immune system wasn’t strong at all.
For the first 15 months of her life, she was in and out of the hospital, so when we got the all clear, we were so happy to finally have three healthy babies. We felt extremely lucky because we knew we came so close to losing Charlotte. But all that positivity and happiness was quickly taken out of our lives a few days before Damien and Charlotte’s second birthday. One morning I went to get my two babies from their bedroom only to find Damien lying cold in his cot – he wasn’t breathing, his heart wasn’t beating, and that cheeky smile of his had been wiped from his face.
I was speechless. It was unbelievable. I didn’t know what to do.
How was it possible that Damien, who was the healthy and happy one had died, but Charlotte who had all the problems was absolutely fine?
How was it possible for my baby boy who was giggling the day before and eating all his meals not breathing?
It was absolute chaos. My mind was chaotic, and the house was chaotic. We had the ambulance and police come to our house, but there was nothing they could do.
We found ourselves at the hospital again, only this time, to say goodbye to my beautiful baby boy. And that was it – we returned home without Damien, without a piece of my heart, and without an answer as to why, what, and who snatched that piece of my life away from me.
The following months were difficult, to say the least. The days were silent, my nights were long and restless, and I found myself constantly walking into Alexander and Charlotte’s room while they were sleeping to check if they were still breathing.
More gruelling months passed, and still we received no explanation as to why my Damien died. It was unbelievable.
With a background in biochemistry, I was determined to leave my job as a lawyer to find out exactly what happened to my healthy baby. If no one else was going to tell me, I needed to find the answer myself.
I would spend my nights and weekends scrambling through research papers in libraries, desperate to find an answer. I knew deep down that there was a definite reason behind these babies who were dying just like my Damien.
But I found nothing, and my family and friends encouraged me to move on with life. Even the doctors told me to just go home, enjoy my living babies, and try for more. But how could I possibly do that?
It took a lot of courage to finally bring myself to accept the fact that the devil responsible for my boy’s death would forever remain anonymous.
However, it all came rushing back three years later on a fateful day with Amelia.
I was at a musical play group meeting my dear friend who had just given birth to Amelia. But the moment I saw Amelia, I had vivid flashbacks of Damien lying in his cot – she was sleeping face-down in the pram, and every part of me wanted to beg my friend to never sleep her baby on her tummy. But I was trying to get on with my life, and I didn’t want to be a coward by ruining the happy occasion, so I kept those screaming thoughts to myself – and to this day, this is a decision I’ll forever regret.
I still vividly remember that morning I was sitting in my office overlooking the harbour carrying on with my work, when I received a phone call from a friend I never wanted to receive; Amelia had passed the night before. The anonymous mystery had taken Damien and Amelia, and I couldn’t take it anymore.
I got up from my desk, walked into my boss’ office, resigned, and made a solemn resolution to leave no stone unturned in my quest to solve the mystery of the Sudden Infant Death Syndrome (SIDS).
Was I out of my mind? Maybe. Did I do the right thing? Yes, because fast-forward 28-years from Damien’s death and there have been major advancements in our understanding of SIDS.
We know certain factors like sleeping on the stomach or side and overheating can increase the risk of SIDS, but there is so much more to it.
The statistics are still shocking, too – almost three babies die every week in Australia alone. In NSW, 30 to 40 babies die every year.
While my team’s work at Children’s Hospital Westmead and Sydney University have been able to identify further risk factors, we are still unable to pinpoint a certain vulnerability that babies like Damien and Amelia had.
If only we could recognise this vulnerability through a simple blood test, then we could keep those babies safe, we could monitor them well, and would be able to work with them to try and figure out how this vulnerability manifests itself in sudden death.
Although there is no guarantee we have the definite answer, our research shows we are so close to finding one. The only problem is, there’s no money to fund our research. It’s disheartening to know, and frustrating to think I have spent the last 25 years of my life, and possibly need to spend the next 20 trying to find an answer, not only for myself, but for all the other parents who are living on a cloud of uncertainty, for all the expecting parents, and for all the friends and family who have had to deal with the grief brought on by SIDS.
This is why I have turned to the public for help and started Damien’s Legacy – a crowdfunding page to help raise money and awareness of SIDS. It’s unconventional for researchers to ask for help, but in this case, it’s duly needed.
I’ve resisted from telling this story for so long as it still brings me to tears and has caused so much grief in my life, but now I see it as a privilege to share because I know I’m just one of the many, many people with this difficult story. As much as it’s a personal journey for myself, it’s a journey we can all take part in to end the heartache of SIDS; because there’s no better joy life can give you other than watching your children grow into beautiful and healthy adults.
If you would like to help support Dr Carmel’s research, head to Damien’s Legacy here. Any donation, big or small, will bring the world one step closer to putting an end to SIDS.
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