PAEDS Small Talk

Melanine Dimmitt is a writer, author, editor and broadcaster. She is also a mother of two young children, one of whom has a profound medical disability and one she describes as "medically boring".

She has interviewed some of Australian royalty and written for well know publications such as The Age, Sydney Morning Herald and MamaMia, and when her son Arlo was diagnosed with cerebral palsy she used her skills in journalism to create a beautiful book 'The Special Book' showcasing the range of experiences children with disabilities and their families have.

Mel speaks about how her son has taught her to be present, engaged and mindful as a mother, she is also a great advocate for people who use tube feeding and aims to switch that narrative from a perception that all tube fed people are terminally ill and have no quality of life.

Mel is an inspiration and will inject a dose of optimism and hope into your journey of parenthood and reminds us as health professionals that there is no harm in leaving families and children with room for hope.

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visit our website at www.paedseducation.com.au

Just before Ania's eldest daughter turned 2 she noticed Grace was not meeting her developmental milestones. She was fairly quickly diagnosed with autism and rapidly linked in with NDIS support.

In 2020 admits the COVID pandemic and after the birth of Ania's third child, Grace began having seizures which resulted in her ending up in hospital to investigate the cause. Genetic testing revealed two rare genetic disorders SCN2A and TRAPS which explained many of Grace's symptoms including her diagnosis of autism and the seizures.

Ania shares not only her journey so far with Grace but also her advice on how to support families and children with autism in a public space with patience and kindness going a long way. But, also how in healthcare we can be adaptable to support children to feel more comfortable during a very stressful time.

The proceeds from this episode go to  Epilepsy Australia a not-for-profit organisation and a nationally registered charity and is committed to improving the quality of life for every Australian living with epilepsy and other seizure disorders.

Resources
SCN2A
TRAPS

Support the show

visit our website at www.paedseducation.com.au

Chantal Donnelly has a strength that could move mountains and a positivity that will fill your day with such joy. Her beautiful son Soul was born with a rare condition called SENS, only diagnosed this year after 18 months of investigations, discovering new symptoms and piecing together a very complex puzzle.

In this episode we chat about Chantal's textbook pregnancy and birth and the immediate period following birth that revealed something was not quite as 'textbook' for her son.

Chantal shares her insights on what has helped her to manage the trauma of having her newborn suddenly transferred to another hospital shortly after birth, the journey of discovering Souls rare diagnosis and the complex medical world that she currently navigates to help Soul reach his full potential.

This episode supports the charity Face Quality International who are working to create a world where those with facial disfigurements are free to be themselves and thrive https://faceequalityinternational.org/

Support the show

visit our website at www.paedseducation.com.au

Join us as we chat with Kate, a paediatric ICU nurse and friend of ours who has been on an incredible journey. As an adult who had a congenital heart disease herself, she brought a unique perspective to her career as an ICU nurse, offering support and encouragement to her young patients and their families.

When her first son Josh was born, he needed a stint in the special care nursery, and Kate balanced the roles of nurse, mother and patient as she watched her son struggle and she tried to find her voice to advocate for him. Kate describes what has worked for her over the years of Josh's life and as his needs have changed, from needing an tube for feeding as a newborn to needing a place where he would be welcomed and encouraged as he entered into the schooling phase of his life.

We really loved talking to Kate about this and discovered so much more about her journey into motherhood and hope you enjoy listening to this podcast too.

Resources we speak about in this podcast
https://rarechromo.org
Kates chosen charity
https://www.thesisterhoodproject.com.au

Support the show

visit our website at www.paedseducation.com.au

We acknowledge traditional owners of the land and pay respects to Elders past, present and emerging. We recognise their connection to Country and their role in caring for and maintaining Country over thousands of years. 

Join us on the PAEDS ‘Small Talk’ Podcast, where we chat about some pretty big topics with everyday families, doing incredible things. 

As paediatric nurses we have cared for children in the intensive care unit and across many different wards and disciplines in our careers, and we thought we knew everything we needed to know to support children and their families.

But it wasn't until we started teaching carers in children's homes that we really got offered a seat at the family table to gain an insight into the incredible ways parents and carers are navigating everyday life as a family when their child has a complex medical illness or is recovering from a traumatic injury. 

We have always been in awe of these incredible children and their families, but when we sat down over a cuppa and a chat, we gained a much better perspective of the struggles, the challenges and the beautiful and incredible success and achievements that these families experience daily.

These stories are those of everyday heroes, of parents or siblings who go to extraordinary lengths to give their children a home in which they can not just survive, but thrive. These are the stories of parents that advocate, support and nurture their families that include a child with a medical illness or injury that means everyday life may look a little different for them. There will be tears of happiness and also of grief, as we get real.

These stories are just too amazing for us to keep to ourselves, and so we want to bring you in on the conversation too, so we hope you have some time to listen to PAEDS ‘Small Talk’.

Grace & Sarah
PAEDS 

Support the show

visit our website at www.paedseducation.com.au