'They give me goosebumps': simple joys, special moments for dying kids

The Advertiser

17-05-2025

When little ones die, it's a devastating time for families.
There's pain, suffering and emotion, but there's people who can help.
Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care".
"Our role is to support any child or young person with a life-limiting illness," Ms Scully said.
Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death.
"We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said.
There are many poignant moments.
"There are certainly things that give me goosebumps," Ms Scully said.
"It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died.
"There are those intangible things that happen but are hard to measure."
Simple joys and helping children live their best lives were important.
"We have little babies who get pleasure from having a bath and soaking in warm water," she said.
"For some kids, it's getting to school to see their friends. For others, it's being able to go outside."
The service helps children ease pain and suffering.
"Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness.
"It could be fear and anxiety. We manage that.
"There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management."
Some children are fed through tubes in their tummies.
"They aren't able to eat and taste things. Often we will talk to families about risk versus benefit.
"For some kids, having a little taste of something gives them pleasure, even if they're not swallowing."
Some kids are fatigued.
"They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?"
Humour plays a big part.
"People often say it must be so depressing, but we have so much laughter.
"Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine.
"There's a lot of banter and happiness that goes on."
Paediatric palliative care can be long term.
"We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well.
"We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy."
When little ones die, families can see their bodies at John Hunter Hospital's mortuary.
"The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said.
The Minns government is boosting paediatric palliative care funding to about $80 million over four years.
"Some of this funding has gone to improve the mortuary area for families," Ms Scully said.
"A more calming and supportive space for families is important to us."
When little ones die, it's a devastating time for families.
There's pain, suffering and emotion, but there's people who can help.
Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care".
"Our role is to support any child or young person with a life-limiting illness," Ms Scully said.
Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death.
"We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said.
There are many poignant moments.
"There are certainly things that give me goosebumps," Ms Scully said.
"It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died.
"There are those intangible things that happen but are hard to measure."
Simple joys and helping children live their best lives were important.
"We have little babies who get pleasure from having a bath and soaking in warm water," she said.
"For some kids, it's getting to school to see their friends. For others, it's being able to go outside."
The service helps children ease pain and suffering.
"Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness.
"It could be fear and anxiety. We manage that.
"There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management."
Some children are fed through tubes in their tummies.
"They aren't able to eat and taste things. Often we will talk to families about risk versus benefit.
"For some kids, having a little taste of something gives them pleasure, even if they're not swallowing."
Some kids are fatigued.
"They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?"
Humour plays a big part.
"People often say it must be so depressing, but we have so much laughter.
"Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine.
"There's a lot of banter and happiness that goes on."
Paediatric palliative care can be long term.
"We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well.
"We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy."
When little ones die, families can see their bodies at John Hunter Hospital's mortuary.
"The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said.
The Minns government is boosting paediatric palliative care funding to about $80 million over four years.
"Some of this funding has gone to improve the mortuary area for families," Ms Scully said.
"A more calming and supportive space for families is important to us."
When little ones die, it's a devastating time for families.
There's pain, suffering and emotion, but there's people who can help.
Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care".
"Our role is to support any child or young person with a life-limiting illness," Ms Scully said.
Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death.
"We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said.
There are many poignant moments.
"There are certainly things that give me goosebumps," Ms Scully said.
"It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died.
"There are those intangible things that happen but are hard to measure."
Simple joys and helping children live their best lives were important.
"We have little babies who get pleasure from having a bath and soaking in warm water," she said.
"For some kids, it's getting to school to see their friends. For others, it's being able to go outside."
The service helps children ease pain and suffering.
"Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness.
"It could be fear and anxiety. We manage that.
"There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management."
Some children are fed through tubes in their tummies.
"They aren't able to eat and taste things. Often we will talk to families about risk versus benefit.
"For some kids, having a little taste of something gives them pleasure, even if they're not swallowing."
Some kids are fatigued.
"They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?"
Humour plays a big part.
"People often say it must be so depressing, but we have so much laughter.
"Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine.
"There's a lot of banter and happiness that goes on."
Paediatric palliative care can be long term.
"We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well.
"We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy."
When little ones die, families can see their bodies at John Hunter Hospital's mortuary.
"The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said.
The Minns government is boosting paediatric palliative care funding to about $80 million over four years.
"Some of this funding has gone to improve the mortuary area for families," Ms Scully said.
"A more calming and supportive space for families is important to us."
When little ones die, it's a devastating time for families.
There's pain, suffering and emotion, but there's people who can help.
Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care".
"Our role is to support any child or young person with a life-limiting illness," Ms Scully said.
Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death.
"We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said.
There are many poignant moments.
"There are certainly things that give me goosebumps," Ms Scully said.
"It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died.
"There are those intangible things that happen but are hard to measure."
Simple joys and helping children live their best lives were important.
"We have little babies who get pleasure from having a bath and soaking in warm water," she said.
"For some kids, it's getting to school to see their friends. For others, it's being able to go outside."
The service helps children ease pain and suffering.
"Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness.
"It could be fear and anxiety. We manage that.
"There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management."
Some children are fed through tubes in their tummies.
"They aren't able to eat and taste things. Often we will talk to families about risk versus benefit.
"For some kids, having a little taste of something gives them pleasure, even if they're not swallowing."
Some kids are fatigued.
"They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?"
Humour plays a big part.
"People often say it must be so depressing, but we have so much laughter.
"Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine.
"There's a lot of banter and happiness that goes on."
Paediatric palliative care can be long term.
"We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well.
"We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy."
When little ones die, families can see their bodies at John Hunter Hospital's mortuary.
"The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said.
The Minns government is boosting paediatric palliative care funding to about $80 million over four years.
"Some of this funding has gone to improve the mortuary area for families," Ms Scully said.
"A more calming and supportive space for families is important to us."