A look inside specialist palliative care for children

Unless your child has been diagnosed with a life-limiting illness, it’s impossible to comprehend the physical and emotional torment families face when receiving this medical prognosis. It is gut-wrenching, isolating and completely turns a family’s everyday reality upside down.

At a time when it is so easy to feel alone our Palliative Care teams, across both children’s hospitals and Bear Cottage, are there bringing everything together when it feels like it’s falling apart.

Each year across Sydney Children’s Hospitals Network, more than 500 families rely on this invaluable service for providing psychosocial support, respite care, symptom management, end-of-life care and bereavement support.

In line with the theme for National Palliative Care Week (19 - 25 May), ‘What Matters Most’, paediatric palliative care puts the emphasis on life, with a focus on ‘can’ rather than the ‘cannot’ and making the most of every single moment.

Making sense of a world turned upside down

‘Why are they here?’, ‘Why do they need to be involved?’, ‘Why is this happening?’ These were all questions Lili’s mum, Sara, asked herself, and are common questions faced by families, when first introduced to the Palliative Care team.

Lili was diagnosed with severe epilepsy at just 14 months old and bravely battled the condition for the next three years.

“Lili had her first seizure in 2015 and from that moment our lives changed forever,” Sara, said.

After one month, Lili’s condition worsened and she started regressing. Despite all the medications doctors tried, her seizures could not be controlled. The Hospital became her home, with admissions lasting up to 11 months at a time, and eventually Sara was introduced to the Palliative Care team.

Introducing a new form of support

“At the time, this was not something I could get my head around and definitely not something I could bear. I remember thinking ‘my daughter’s not going to die so why is this team here?’” Sara said.

“So many questions ran through my mind, there were many sleepless nights and endless worrying. I was petrified, heartbroken and completely lost.”

 Despite her fears, Sara put on a brave face and gradually began to let the team into their lives.

“I would give them a big smile and go on about how great Lili and I were doing. I’d make out that everything was fine to hide what was really happening.”

“But then I started enjoying our daily visits. Everyone was so warming and I knew their aim was to support Lili and I in any way they could.”

Recognising that life-limiting illness affects the whole family

What matters most in paediatric palliative care is not just supporting the patient but caring for the entire family. This means individualising care to encompass the physical, social, emotional and spiritual needs of all involved.

“The whole team held my hand and gave me strength. They cried with me, laughed with me and picked me up on the hardest days of our lives.

“They loved my Lili and gave her time, but they also gave me love and comfort when I felt isolated and lost,” Sara said.

Lili sadly passed away last year but with the support of the Palliative Care team, Sara was able to create four years of irreplaceable memories that she will cherish forever.  

Knowing where to turn in a time of need

When Lucy was diagnosed with Aicardi syndrome at five months old, her parents Sara and Luke were devastated.

The extremely rare genetic condition causes developmental delay and seizures and is life-limiting. Lucy was given a life expectancy of seven years.

“From that day on our focus changed,” Luke said.

“Caring for Lucy became our life’s work.”

“We didn’t know how long Lucy would survive and we really just wanted to make sure she had the best life possible.”

 Lucy is one of five children. She also has two sisters and two brothers who adore her.

“What really mattered for us was that Lucy was surrounded with a bunch of brothers and sisters who care for her with compassion and love,” Luke said.

Having a big family didn’t come without its challenges. Caring for Lucy full-time plus keeping the family running smoothly took both a physical and emotional toll on Luke and Sara, which is when they turned to Bear Cottage.

Giving new meaning to palliative care – the Bear Cottage experience

“I cannot describe the gratitude we feel towards Bear Cottage and all the staff and volunteers who have supported us so kindly all these years,” mum Sara said.

“It was such a relief to hand over the medical care of Lucy to the nurses, who were fully trained and totally capable of handling her complicated routine, and just have a family holiday.”

Luke added, “The nurses at Bear Cottage always look after Lucy so well but they also take the time to keep an eye on how the rest of us are getting on. Their care and concern for our whole family is priceless.”

Lucy recently celebrated her eighteenth birthday – a milestone parents Sarah and Luke never imagined they would reach but one that palliative care has played a very big role in them achieving.

Different types of palliative care for Lucy

Over the years, palliative care has extended well beyond simply improving Lucy’s quality of life and helping ease her symptoms, it has become about the little things that help create lifelong memories for the family. This includes music, art and play therapy for Lucy and respite camps for Luke, Sara and Lucy’s siblings.

“Having a team of doctors, nurses and social workers at the beginning to help us make decisions and establish care goals was so helpful,” Sara said.

“As the years went on though, the focus shifted to being about all the other therapies that enhance not just Lucy’s experience, but the experience for the whole family.

"It has truly helped bring us closer together.”

Focus and future of palliative care at SCHN

Across the Network the focus of palliative care is, and always will be, on what matters most to the entire family.

  • Supporting patients and families through treatment while in hospital
  • Empowering families to create lifelong memories at Bear Cottage, or
  • Taking the steps to make it possible for their child to spend their final days in the comfort of their own home.

With a $6.5 million investment by NSW Health between 2013/14 to 2017/18 to enhance the Paediatric Palliative Care Program and a feasibility process underway for Big Bear Cottage, a hospice designed for young adults, the Network’s service is only set to expand further in the coming years. This will provide families with even more support in their time of need – and that’s what matters most.

National Palliative Care Week 2019 begins Sunday May 19.

Find out more about the Network’s Palliative Care Service and how you can help.