Sleep expert Dr. Carmel Harrington devoted her career to researching Sudden Infant Death Syndrome (SIDS) after her two-year-old son Damien died of the condition in 1991.
And now, 29 years later, research led by Dr. Harrington for a world’s first breakthrough that could potentially lead to the prevention of SIDS.
Together with The Children’s Hospital at Westmead in New South Waleshave dr. Harrington and a team of researchers identified the first biochemical marker that indicates a baby’s vulnerability to SIDS while still alive.
The study published by The Lancet’s eBioMedicine found levels of butyrylcholinesterase (BChE), an enzyme that plays an important role in the brain’s arousal pathway, were significantly lower in infants who died of SIDS compared to live controls and other infant deaths.
dr. Carmel Harrington (pictured), from Sydney, spent 29 years raising awareness and finding answers about Sudden Infant Death Syndrome (SIDS) after her two-year-old son Damien died of the condition in 1991
BChE plays an important role in the brain’s arousal pathway, and researchers believe its deficiency likely indicates arousal deficiency, which reduces a baby’s ability to wake up or respond to the external environment, creating vulnerability to SIDS.
Researchers believe the findings have the potential to be game-changing, opening up the possibility for intervention.
This will also finally provide answers to parents who have lost their children to the tragic condition that caused sudden death.
“Babies have a very powerful mechanism for letting us know when they are not happy. If a baby is faced with a life-threatening situation, such as breathing difficulties during sleep because they are lying on their stomach, they will usually wake up and cry out,” said Dr Harrington. The Sydney Children’s Hospital Network.
“What this research shows is that some babies don’t have the same powerful arousal response.
“It was long thought that this was the case, but until now we didn’t know what caused the lack of excitement.
“Now that we know BChE is involved, we can start to change the outcome for these babies and make SIDS a thing of the past.”
dr. Harrington was a devoted mother of three when her world was devastated by Damien’s sudden death (both pictured in 1991)
WHAT IS SIDS?
Sudden infant death syndrome (SIDS) is the sudden, unexplained death of a baby that has no known cause, even after a full investigation.
Most deaths happen during the first three months of a baby’s life.
Babies born prematurely or babies with a low birth weight are at greater risk.
SIDS is also more common in baby boys. Most unexpected deaths occur while the child is sleeping in his crib at night.
Source: Health directly
In 1991 Dr Harrington, from Sydney, practiced law but quit her job to devote herself to raising awareness and finding answers about SIDS after the loss of her son.
Now a renowned sleep expert, Dr. Harrington partnered with Sydney University and Children’s Hospital Westmead to fund research to determine why some children are more vulnerable to SIDS.
She previously shared her heartbreaking story with FEMAIL, discussing the passion she has found since the loss of her son.
Of her three children, daughter Charlotte had the most difficult start in life.
‘My eldest child Alexander was always healthy; when I had the twins, Damien and Charlotte, Charlotte was quite ill – she was in intensive care for quite some time and had many surgeries.
“If anyone was going to have health problems, we assumed it would be her, but Damien was fine.”
“He was absolutely perfect — I hate to say it, but in every way he really was,” she said.
But just days before her twins’ second birthday, Dr. Harrington’s world collapsed around her when she found Damien lifeless on his face in his crib.
Nearly thirty years later, I’m still breathless – he laughed and giggled hours before.
“For months it’s been like a bad dream. You can’t sleep, you can’t eat, and I know sudden death of any kind triggers these feelings for everyone, but when it’s a little baby they’re especially intense.”
“He was absolutely perfect — I hate to use the word, but he really was,” said Dr. Harrington
‘My bachelor’s degree is in biochemistry, but I went back and did a lawyer’s degree because it’s quite difficult to get enough funding for scientific research in Australia.
“After Damien, I spent a lot of time doing my own research and talking to experts, and I realized no one could tell me why this had happened. There were no answers.’
Inspired by tragedy, Dr. Harrington made it her mission to go back to college to get a doctorate in infant sleep so she could focus on SIDS.
Working on research and awareness initiatives about the condition, Damien’s death has once again come to the fore for Dr. Harrington, reminding her of how hard she struggled to come to terms with his passing.
After Damien’s death, Dr Harrington spoke to experts but could not find answers
“A few years later, as it approached Charlotte’s fourth birthday, it dawned on me that he wasn’t coming back.
“I know this may be hard for others to understand, but I really kept thinking that something was going to happen to bring him back – I don’t think I would have completely let go or accepted what had happened up to that point.
‘This research is not a solution to SIDS, but it is revealing promising facts – it is so important.
“We’re trying to figure out why some babies are more vulnerable than others, they haven’t figured it out yet.”
dr. Harrington’s children Alexander (left), Damien (center) and Charlotte (right) shortly before Damien died
Her research, in collaboration with Sydney University and Children’s Hospital Westmead, requires $100,000 in funding.
‘We called it’ Damien’s legacy and our goal is to end the heartbreak of SIDS.
“We need $50,000 for the first phase and another $50,000 for the second phase.
“We’ve been crowdfunding for a few weeks and it’s already at $42,000, which is incredible, so we’re focusing on that last push before the first round.”
Despite her personal tragedy, Dr. Harrington always carries a piece of her son with her thanks to her medical examination.
Life is never the same after the loss of a child. I was smashed into a million pieces and had to put myself back together over time, but I found a new piece for myself.
‘Damien gave me the passion for my research, he did that for me.’