Case of Qld baby Scotti helps to redefine purpose of palliative care
Scotti was referred to this palliative care unit at four weeks. But the focus is not on death, but about squeezing the joy out of every moment.
Palliative care is not about dying for little Scotti’s mum — it’s about living.
It’s about squeezing the joy out of every moment and allowing her sassy six-month-old with the impressive side-eye to live out the life she deserves.
Scotti was referred to the Queensland Children’s Hospital pediatric palliative care services when she was just four weeks old. She has been in hospital for all her life and has not yet seen the family farm in Toowoomba where her mum and dad and big sister Willow live.
The dream is that she will make it there before Christmas.
The tiny tot is the only known person to be born with her exact, very complex, genetic deletion so she has no one’s footprints to follow. Her future is an unknown.
There have been many moments in her short life where her family feared they would have to say goodbye.
“Prior to Scotti being born we were unaware of her genetic condition and all of the unknowns and complexities that come with it. After she was born, it was identified early on by the amazing team at the Mater that Scotti needed more help to breathe than the average ‘33 weeker’ and had some unique physical features,” mum Bridget Curran said.
“Following her diagnosis and some tough conversations we chatted with her team about palliative care and what support they might be able to offer to Scotti and our family.
“The palliative care team were amazing at explaining how pediatric palliative care supports in more than just end of life care but also in enriching the lives of children who live with chronic health conditions.”
Scotti was born with a genetic deletion on chromosome 15, which means some of her DNA is missing.
Scotti’s deletion is large and involves the area of Prader-Willi Syndrome. It involves 285 genes, with the functions of only five of these genes being known.
“As far as we are aware Scotti is the only person known to have this exact deletion, which made it hard in the early days not knowing what this would look like or mean for Scotti as time went on,” mum said.
QCH pediatric palliative care services director Anthony Herbert said that looking after children like Scotti means putting the focus on quality of life.
“But we acknowledge that she does have a very serious and complex condition that will be lifelong and it is associated with a degree of fragility,” Dr Herbert said.
“A large number of patients referred to us are less than one year of age. These children may have neurological conditions or genetic syndromes, cardiac conditions, or metabolic disorders,” he said.
The director said the service sometimes meets with mothers who are expecting a child with life limiting conditions.
“As children get older, we have more patients referred to us with advanced cancer and children with advanced cancer, the single biggest group that our service supports.”
He said the palliative care service was a very “relational specialty”.
“We obviously are meeting families at a really difficult time when their baby, infant or child have been diagnosed with a serious condition. We do our best to get to know the baby or the child and their parents, who they are and what’s important to them, and also what they need as well,” Dr Herbert said.
“We look at the child holistically in the context of their whole family. We might be managing pain and other symptoms, such as breathing problems or difficulty sleeping. We also acknowledge the emotional and psychological aspects. Some children might experience anxiety or fear.”
For Scotti’s family, the QCH has been a godsend offering endless support during challenging times and sharing joy with every one of Scotti’s wins.
“For a long time we truthfully didn’t know if she would survive, with some incredibly tough spots along the way that we prepared to say goodbye. Some of the worst days of our lives have been spent inside hospital walls sitting in the unknown, waiting for Scotti to show us which path she was taking,” mum said.
Originally published as Case of Qld baby Scotti helps to redefine purpose of palliative care
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