Red Nose Day ambassador Amie Rohan highlights the importance of seeking help

Ms Rohan and her two daughters Bella, 3, - Willow's twin, and Sadie, 16 months, call them 'Willow's Rays' and it's a constant reminder their sister, who died five hours after birth in 2018, is right there with them.

Since that devastating day and the tough three years that have followed, the former south-west resident has worked to shine a light on grief and child loss, sharing her story for others in similar circumstances.

Ms Rohan is a Red Nose Day ambassador raising awareness of Sudden Unexpected Death in Infancy. The term refers to babies aged 0-12 months who die while sleeping or in the sleeping environment.

Friday is Red Nose Day and the public is encouraged to buy a red nose or donate to raise money for research, education and advice for new parents, including the Red Nose Safe Sleep Advice Line.

Ms Rohan, 28, grew up in Scotts Creek and attended Timboon P-12 School, playing netball at Cobden from the age of 15. She lives in Ocean Grove, since separating from husband and Geelong AFL footballer Gary last year.

"I've been dealt some pretty horrible life events in the past couple of years and I've basically hit rock bottom," Ms Rohan said. "I want to help anyone else in that situation. When you can't see it, there really is a light at the end of the tunnel - no matter how hard it is to see it initially."

Willow, whose middle name was Nevaeh - heaven spelt backwards, passed away from a neural tube defect with no cure, known as anencephaly. The couple learned of Willow's fate when Ms Rohan was 11 weeks pregnant.

"The day we found out I didn't want to shy away from it," she said. "I thought 'I'm pregnant with twins and I'm going to lose one but I'm going to be okay'.

"I think that's a bit of country attitude, to pick yourself up and dust yourself off. But I will admit, the country attitude of 'she'll be right' didn't really help me, because I thought I was alright and I wasn't for a long time."

"It was when another trauma event happened on top of the trauma (of losing Willow) that I was like 'wow I've probably been in survival mode for a long time, surviving and not so much thriving'."

Government statistics, released this week, show there has been a 20 per cent increase in sudden infant deaths in Australia. More than 3000 babies and young children have died. These included 112 SIDS and fatal sleeping accidents, 718 neonatal deaths, 66 were early childhood deaths, from causes including drowning and poisoning and more than 2100 stillbirths.

Once informed of Willow's condition, Ms Rohan used social media as an outlet and to connect with other families who'd had a similar experience, prior to the twins' birth.

She continues to have a strong social media presence, sharing photos and stories of her three girls, with regular reflections and affirmations about life and loss with her more than 45,000 Instagram followers.

She's also started an Instagram page called willowrays for grieving parents to share their stories and connect.

"Everyone says 'you're so strong' but I'm like the sun's going to come up tomorrow and I still have friends and family and things to be here for."

Her bright, infectious smile fails to truly show what a "rollercoaster" the past few years have been and she sees a psychologist regularly to help with her mental health.

"I think too many people shy away from it and that's when it can lead to bigger issues," she said. "You can't run away from issues. It's always going to be there no matter what."

She said enrolling Bella in childcare late last year was tough. "It's the emotions that come with that," Ms Rohan said. "You're watching her go through a life event that she would be going through with her sister. It's going to happen forever. It's hard."

She's also struggled with separation anxiety and allowing other people to care for Bella.

"I had it in my head that if anyone else had her something would happen to her too," she said. "But apparently it's a really common thing to happen after you've lost a child, not feeling safe having them in the hands of anyone else."

Ms Rohan has also partnered with mental health charity One in Five. She wants anyone who's struggling to realise it's okay to not be okay, but more importantly to take the next step and seek help. "Put your hand up and work through it to get out the other side. I've been through the whole rollercoaster.

"Everyone heals differently and people have different ways to cope. Mine is speaking and opening up," she said.

She said she'd had amazing support from friends and family. "I think it's what's got me through. I don't know what I would have done without them.

"I want to help people where I was," she said. "There's a quote 'when you get to where you're going, turn around and help her, because there was once a time when she was you'. (The advocacy work) it's not for me it's to turn around and help her."