Advocates and researchers of Sudden Unexplained Death in Childhood are calling for better awareness and funding for research into the condition during SUDC Awareness Month.

Sudden Unexplained Death in Childhood is a category of death for a child 12 months or older, that remains unexplained after investigation. Processes used to examine a case of SUDC include a complete autopsy, examination of the death scene and clinical history review.

Perth mum Drew La Reservee first found out about SUDC through her own research, after her son Micah passed away in his sleep at 17 months old, almost two years ago.

Miss La Reservee says she wants more awareness about the risk of SUDC, and better support for the families who experience it.

“Every single person that I’ve spoken to hasn’t heard of it. Whereas you mention SIDS and everyone knows what that is,” she says.

“I remember saying to my partner when Micah turned one, well, now we’re good. Now we’re out of that danger zone of SIDS, we’re fine and he’s healthy.

“Obviously, that’s not the case.”

Miss La Reservee has been waiting almost two years for the final report on Micah’s passing to be released, but expects there will be no finding.

“I know we’re not going to get an answer because in the email, it said unascertained as their answer, which is no answer.” 

Following Micah’s passing, Miss La Reservee began posting on TikTok in 2024 as part of her grieving process.

Miss La Reservee says she doesn’t want to scare anyone; she just wants more people to be aware of SUDC.

“When you do go into a labour ward or a hospital in general, there’s posts everywhere about SIDS and Red Nose, and nothing touches the surface on SUDC,” she says.

Perth mum Cassandra Otway reached out to Miss La Reservee after a friend saw one of her videos.

Mrs Otway’s daughter Sadie passed away in her sleep at 2 years old, after having multiple febrile seizures throughout her life.

As the result of the Coroner’s Report was undetermined, meaning Sadie’s cause of death is considered to be SUDC.

“I wish we had been told that febrile seizures can be fatal for some. I wish we were told to get a sleep monitoring device. That could have changed her life.” She says.

Mrs Otway says the hardest thing for her and Miss La Reservee was the lack of information about SUDC.

“It was torturous trying to find people to connect with in those early days,” she says.

Both Miss La Reservee and Mrs Otway went to Red Nose for support following their experience with SUDC but were not connected until they found each other.

“We’re only two people. I can only imagine how many other people have also gone through Red Nose and also lost their child through SUDC.”

“We’re not asking for you to put it on the news or in articles straight away. Just build a group. Just make us not feel alone.”

Miss La Reservee says the lack of connection to others who had experience with SUDC felt isolating.

“People say they specialise in grief and loss, but it’s not child loss.”

“I think having a team … that are knowledgeable around SUDC and know how to support parents that have lost a kid over one, would be a good way to start.”

“Sometimes we have to explain ourselves to doctors or medical professionals, and that’s really frustrating because at that level, everybody should know about it.

“It would be really nice to just say to someone ‘I lost my daughter to SUDC’, and not have to explain it.”

Red Nose Australia Chief Executive Officer Amy Cooper says she believes the lack of awareness about SUDC is because of the absence of known risk factors.

“It makes it very hard for Red Nose to be able to educate on how to prevent sudden unexplained death in children because there are no known risk factors and there aren’t any specific prevention strategies as a flow on for that.”

Say Their Name Day is an annual event organised by Red Nose on March 25 to honour the memories of babies and children who have been “loved and lost”.

Ms Cooper says Red Nose encourages parents who have lost children to lift their voices and bring awareness to issues that affect Australian families.

She says Red Nose is an active contributor to funding and trying to understand underlying causes of SUDC.

“It’s a case of ensuring that all families that experience the tragic loss of a child in unexplained circumstances have the support of Red Nose through all of our bereavement, grief and loss support services.”

Melanie Andrew-Manning is completing her PhD in Biomedical Science focusing on the microbial and the immunological origins of SUDC, as part of broader research funded by Red Nose.

Ms Andrew-Manning says she is grateful to receive the support from Red Nose.

“Red Nose is just one company. They might not always get it right. But they are trying to do their very best.”

Ms Andrew-Manning’s daughter Mylee passed away suddenly in her sleep at 15-and-a-half months old.

She says the lack of SUDC research in Australia was frustrating.

“There are some systemic issues with Australia’s coronial service due to the lack of a national system, meaning forensic pathologists classify things very differently from state to state, and from pathologist to pathologist, making it hard to determine an accurate number of SUDC.”

“Whilst there’s a limited amount of research on SUDC, what I know from working in this space is that we get about 50 unascertained cases of childhood death a year here in WA.”

Ms Andrew-Manning says she recommends parents get some sort of sleep monitor for their children.

“One of the things that’s really traumatic for parents after their child passes into sleep is that they weren’t actually there at the time of death to hold their child. And so even if it’s just the fact that you were there at that time, that might provide some comfort in bereavement.”

Ms Andrew-Manning says she purchased a motion breathing sensor for her son after her daughter’s passing, and it revealed that he was stopping breathing during the night, allowing her to get him medical attention and potentially save his life.

She also advocates for parents to trust their gut.

“If there’s a health issue with your child and you don’t feel confident in the medical advice that you’re getting, then please keep pushing. Get a second opinion. Make those doctors listen.”

Ms Andrew-Manning asks for the government and organisations to keep funding consumer researchers, and for families to keep coming together and fighting for what they believe in.

“To anyone that’s going through what we did, I’m incredibly sorry that you have to face that because I know that it is the most devastating thing that you’ll ever go through in life. Whilst your life will never be the same you can learn to live a new kind of normal and life can still be beautiful beyond loss. So don’t give up.”

Seven years ago, the UK mandated a National Child Mortality Database which collects detailed information on every child death from birth to 18 years.

The registry collates data from hospitals, coroners, police, paediatricians and child death overview panels, tracking all the medical, social and environmental information in one place.

Cofounder of SUDC Australia Brooke Pratley says Australia should adopt a similar system, as it makes it much easier for researchers to identify pattern, risk factors and emerging concerns.

Ms Pratley’s daughter Isla passed away at two and a half years old, after taking a nap on Father’s Day in 2021.

“When she died, I just thought that we were the only people in the world whose child had died for no reason. We weren’t referred to any services. We didn’t know what had happened.”

Ms Pratley co-founded SUDC Australia alongside three other mothers across Australia, and has been working closely with the US SUDC Foundation on setting up the charity.

She says she found it difficult to navigate the coronial process due to different codes in Australia.

“In some states, the family is invited to have a sit-down meeting with a coronial counsellor, social work services and a medical expert to explain their findings,” she says.

“In our case, when my daughter’s death investigation finalised after close to 18 months, we just received a report unannounced in the mail.”

“We will be working with coronial services when we launch, so that they can hopefully refer families to us.”

“We don’t know how many children die each year from an unknown cause.

“Without having a number on these cases, it’s really hard to raise awareness.”

Ms Pratley says she also wants to improve education around febrile seizures and the risks associated, changing the conversation from one centred around reassurance to proactive measures like the use of sleep monitoring devices.

“It’s a conversation that happens with parents with epileptics but not a conversation that happens when you turn up to emergency and your kid’s had a febrile seizure. And in Isla’s case, it would have saved her life.”

“It’s particularly confronting and confusing when there’s no known cause of your child’s death, but you’re not actually alone.”

If you or someone you know has experienced SUDC, or the loss of a child or infant, you can reach out to Red Nose Australia’s free 24/7 support line at 1300 308 307, or access SUDC specific support and guidance worldwide through the SUDC Foundation.