We've Got You and South West Healthcare a step ahead of national petition

The city is leading the way, with south-west parents Kathryn and Jared Barkla and Madeline and Matthew McConnell identifying the need for a hospital bereavement room after the loss of their daughters Eloise and Wren.

In partnership with SWH, the families have been instrumental in the development of the room at the Warrnambool Base Hospital, through their foundation We've Got You, which supports families who have lost a child from conception to the age of 16.

The foundation seeks to improve bereavement services in the region and the disconnect between what families need and the co-ordination of support. It has helped to fund memory making kits and angel gowns for grieving families and grief and loss education for frontline workers.

We've Got You was also involved in the appointment of a perinatal bereavement project co-ordinator at SWH in November 2022, which is a regional Victoria first. It's understood the bereavement room is also one of the first of its kind in a regional Victorian hospital.

The e-petition calling for a bereavement suite in every hospital is open for signatures on the Australian Parliament House website and closes April 5. It has attracted almost 30,000 signatures.

NSW mum Sophie Toneguzzi, whose son Huxley was stillborn in 2020, created the e-petition calling for a bereavement suite in every Australian hospital and more support during and after families' hospital stays.

Ms Toneguzzi's only option was to give birth in the standard maternity suite, surrounded by the cries of other healthy newborns being born and compounding her grief.

"We should not be expected to give birth right next to someone birthing a live baby," she said.

The We've Got You founders said the petition had created a national movement, helping to raise awareness and push for widespread change which is what they were advocating for locally.

SWH maternity nurse unit manager Larissa Barclay said it was working with We've Got You to design and create a space where women could birth their stillborn babies and "remain cocooned and supported in that space until they are ready to go home".

Ms Barclay said the space would act as both a birth suite and a postpartum room.

"An appropriate site has been identified within the maternity ward which is away from the other birth suites, and away from other nursing mothers to limit the trauma experienced by parents who have a stillborn child, but remain close to maternity and obstetric staff."

She said great effort was going into considering details such as limiting outside noise and the pathways to and from the suite, helping to maintain parents' privacy as much as possible.

The space could also be used for pre-admission appointments and follow-up counselling appointments for parents who were expecting or have had a stillborn birth, Ms Barclay said.

"The bereavement space will be a space not only for those who have lost babies during birth, but for palliative paediatric patients and their families or for families that are bereaved and have come to us via our emergency department or elsewhere in our hospital," she said.

Ms Barclay said the hospital was in the process of workshopping a suitable name for the space and it would be guided by feedback from We've Got You and community members.

Mrs McConnell said the petition calling for more bereavement suites also helped highlight the disparity between metro hospitals and regional and rural services, which were reliant on state and federal funding.

"You don't know what you don't have until you've had someone experience a loss," she said.

"There's a lot of us who've had care at the Royal Children's or the Royal Women's hospitals and then go 'why isn't our government supplying the same thing for us? Why are we getting different treatment because of our catchment zone?'

"SWH is a big hospital and services a lot of areas and it should have everything a metro hospital has."

It is a feeling Kathryn and Jared Barkla know only too well after losing their daughter Eloise at 12 weeks old to Sudden Infant Death Syndrome, finding themselves in the emergency department without a dedicated place to grieve.

Mrs Barkla, who also had also had a miscarriage years earlier, said they knew the importance of a bereavement suite and how much it would mean to grieving families.

She said the room would give families time and space to farewell their much-loved baby or child.

"It gives them a chance to not feel rushed, to have that time and privacy," Mrs Barkla said. "To not have people rushing in and out and have that moment of calm together."

Mrs McConnell said there was plenty of amazing work going into the hospital's bereavement program and she hoped the bereavement room at SWH would be up and running soon.

"There's lots of changes coming for our region which are overdue and needed and at the perfect time," she said.

"The changes that are coming to SWH for the families and the community are going to be pretty phenomenal."

The We've Got You Foundation has also started a bereaved mums support group and private Facebook page and has some coming family days planned for dads to meet others in a similar situation.

"They're open to everyone's ideas to make We've Got You as inclusive and supportive as possible.

"Everyone's got their own story and their own experiences and they can bring such great ideas to the table," Mrs McConnell said.

"Kathryn and I have had a SIDS and a neonatal death, so hearing from people who've had stillbirths and early miscarriages is really important to make sure the care is perfect for them as well.

"The community are reaching out and everyone's talking more and more now.

"The support groups are going really well and it's great to see what other people are needing in different scenarios so we can make sure the care is perfect for them as well."

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