By Mikayla van Loon
For the thousands of parents who grieve the death of a baby or young child each year in Australia, finding ways to offer support and provide funding for research is what Red Nose Day is all about.
Friday 12 August marks the 34th time a day has been dedicated to raising awareness around miscarriage, stillbirth, infant death and SIDS, while increasing much needed funds for counselling services.
From March 2021 to April this year, Red Nose provided 22,147 support sessions to devastated families whose baby or young child died – an eight per cent increase on the previous year.
“We’re asking Australians to please give generously on Red Nose Day so that we can continue to meet this unprecedented demand for our support services,” Red Nose CEO Keren Ludski said.
“We provide extremely specialised and evidence-based support to parents who lose a baby – and this support is completely free for them to access any time – day or night.”
Ms Ludski said while the number of SIDS and neonatal deaths are steady, sadly the number of Australians experiencing the death of a baby is going up.
For Healesville parents Jade Bastin and Harley Phillips the pain of losing a child is all too real, grieving the death of their son Toby, who at 23 weeks had a Preterm Premature Rupture of Membranes and was born at 28 weeks.
While his body continued to grow, his little lungs did not and unfortunately weren’t strong enough to support him.
Jade said Toby died just two days before going into another Covid-19 lockdown preventing her and her family from being surrounded by loved ones and disrupting their ability to hold a funeral.
It took weeks for Jade to seek help from a psychologist, even though she was given many resources to call on after the death of Toby, including a brochure from Red Nose.
“I found it really difficult to find the time and the space to make that phone call, especially having other kids, often the only time is at night and by that point you’re tired and don’t necessarily want to open up to potentially having a bit of a meltdown,” she said.
“I feel as a parent, it can be really hard to find the time to access these services. So in the end, I didn’t talk to anybody for quite a while.”
Throughout Jade’s entire pregnancy, she experienced complications, something that in itself was traumatic.
“If you’re someone like me, who’s been through something, not only Toby’s death, but his whole life and even prior to his birth was very traumatic. So I have a lot to work through and there’s a lot of areas to cover,” she said.
“For me personally and other bereaved parents I’ve connected with, often there’s a lot of guilt associated with a child’s death.
“It usually has nothing to do with the parents themselves but you can’t help but feel guilty because they’re your child and they should outlive you, even if there’s nothing you could have done, you just always carry that guilt.”
Jade found solace each day Toby was in hospital by debriefing with her best friend and said “you need that support to get through.”
Although realising not everyone would have that person in their life to call on, Jade said reaching out to any of the free online or phone resources like Red Nose, to talk to someone who will understand your pain and is experienced in the field of grief is so important.
“There’s definitely times when you’re in the thick of it but you really need to talk to somebody right then and that’s when you can use those services.
“As soon as you want to call someone, you can just call them straight away but if you’re going to see a psychologist, you have to wait for your appointment. So that side of it can be challenging. So those services are really, really great for that instantaneous help.”
The other support network that has helped Jade is the groups of bereaved parents, mostly found on social media but some set up by various foundations.
“If you’re feeling really sad or struggling, you can reach out and talk to people who know how you feel. That’s really helpful just to have someone who understands.
“Often we don’t have friends or family that have been through what we’ve been through. So as much as we may want to lean on family and friends for support, sometimes it’s hard because you want somebody who understands exactly what you’re talking about.
“So those support groups set up by those foundations are really helpful.”
Receiving a donated teddy bear with Toby’s name on it, from an anonymous family who had also lost a child, Jade said was a huge comfort.
Mooroolbark’s Treasured Babies, whose volunteers put together clothing and blanket packages for bereaved parents, sent out 3,417 items over the last year, an increase of nine per cent.
“Even though we don’t know who they are, and we’ve never met them, it’s almost like they were reaching out to give us a hug,” Jade said.
This Red Nose Day, communications team member Rachel Bailey said the aim is to reach $800,000 in fundraising to ensure Red Nose can continue offering grief counselling to parents.
“It’s really vital for us. It’s our biggest fundraising period of the year and particularly this year, we’re fundraising $800,000 but we have launched a new $100,000 research grant,” she said.
“We’re very keen this year to make sure we’re raising plenty of money to support that grant but also the rest of the money we raise goes into other research grants, funds our safe sleep advice to new parents and of course, all those bereaved families that we’re supporting every day, who, sadly will continue to need our support.”
Donations to Red Nose Day made this week will be matched by partners and philanthropic supporters and Rachel said “if there’s ever a reason to donate, this will be it.”
With stillbirths up from 2,946 to 2,997 and SIDS deaths remaining steady over the last three years, Rachel said funding is the only way to improve these outcomes.
“The message here is that things aren’t getting dramatically worse, but they’re not getting better either.
“So we need to double our efforts to make a difference here and we really need to plough as much money as we can into research and prevention so we can get those numbers down. That’s absolutely our mission.”
As Jade and her family heal from the death of Toby, sharing the story of his short life helps keep his memory and legacy alive.
“He was just such an incredibly brave, strong little boy. Even through everything he went through, he was such a little ray of sunshine.
“He was very loved and still is very loved. Sharing his story and talking about him and sharing photos and videos of him helps.
“It helps it feel like it wasn’t for nothing, that he didn’t just come and disappear and nobody noticed. It makes it feel like there was some value in it. He definitely touched a lot of people while he was here and he did a lot of good, even though he never left the hospital.”
Donations can be made at rednoseday.org.au or rednose.org.au at any point throughout the year.
