PAEDS Small Talk

In this heartfelt episode, Janaya, shares her family's challenging journey after her son Tobias was diagnosed with a rare childhood cancer called infantile fibrosarcoma. Diagnosed at three weeks old, Tobias's life has been a series of medical challenges, surgeries, and treatments, complicated further by the COVID-19 pandemic. Janaya discusses the importance of parental advocacy, the emotional rollercoaster of medical diagnoses, and the support systems that helped her family navigate their trials. After multiple rounds of chemotherapy and an experimental drug, Tobias is now in remission. Janaya also offers words of wisdom and encouragement for healthcare professionals and parents facing similar battles.Resources discussed in this episode: @idrawchildhoodcancer on Instagram and Facebookvisit our website at www.paedseducation.com.au

In this episode of PAEDS Small Talk, Grace interviews 19-year-old singer Piper Butcher about her journey with a cleft palate, her advocacy role with Operation Smile, and her music career. Despite a start in life which involved multiple oral surgeries to repair  a cleft palate Piper has gone on to become an amazing vocalist and 2023 contestant on Australian Idol. She shares how she has overcome these challenges and emerged stronger on the other side.They also discuss the health system, overcoming challenges, and the importance of effective communication in healthcare for young patients.Piper has an incredible singing voice, have a listen to her beautiful vocals hereCharities mentioned in this episode include Operation Smile and Variety AustraliaThis is our final episode for this season. Listen to our previous episodes or check us out at www.paedseducation.com.auvisit our website at www.paedseducation.com.au

This episode of "Paeds Small Talk" features an in-depth conversation with renowned pediatrician Dr. Lexi Frydenberg. Grace and Sarah discuss navigating the healthcare system when there are developmental concerns about a child. The episode underscores the complexity of accessing pediatric care and provides actionable advice for parents.The episode aims to empower parents by clarifying their options and encouraging proactive engagement with healthcare professionals to ensure the best outcomes for their children's development.Some resources we mention in this episode:Speech Pathology AustraliaOnline paediatricians- Cub CareOnline Allied health - Blossom RuralMedicare care plansvisit our website at www.paedseducation.com.au

Our final episode on this special, poignantly being released on the 12th of May (International Nurses Day) is about Sarah, who began her paediatric nursing career in the UK.In Australia 33% of our nursing workforce are born overseas, and with them they bring a wealth of knowledge and skills that can be applied here to improve the quality of nursing care.Sarah speaks about her experience training in the UK and working in a busy London PICU before relocating to Melbourne and transferring her skills across. Many things are consistent with our nursing practices across different countries, but many things differ as well. We discuss this in this episode, along with placement poverty, a real issue being faced by many nurses studying their undergraduate degrees in todays climate. But we also have many, many laughs! We hope you enjoy this last and final episode of our mini series for 2024 International Nurses Day, thank you to all our guests and to all nurses out there in the world. You're doing a great job!

Episode 4 in our mini series for International Women's Day 2024 we are speaking with Katie, who entered into Nursing after having already established herself in a different career, and she has never looked back! Katie is an accredited nurse immuniser and a clinical nurse specialist at the Royal Children's Hospital in Melbourne.She's an advocate for trauma informed patient and family centered care and loves to talk about evidence based practice. Katie's worked in healthcare and water and sanitation in Australia, Southeast Asia, and in Pacific Island countries. She's keen to share her passion for immunization and has special interests in needle phobia, vaccination catch ups and international child healthLink to MVEC the NFP she works for and mentions in the podcast here 

Continuing on with our International Nurses Day mini series. Today you are going to hear from Lea. After many years in the acute paediatric space, Lea has made the move into school nursing and supporting children from prep to year 12 with the formative health foundations to make good choices. Its a slow burn, and she doesn't always see the impact she is having straight away, but its incredibly rewarding as you will hear.

International Nurses Day 2024 has the theme 'our nurses, our future, the economic power of care' which highlights the importance that nurses play within our society and how much they contribute to people's health. I this episode of our special mini series for IND 2024 we speak to Rhi who works in a medical and respiratory ward supporting children and their parents through their hospital admissions. She combines her passion for nursing with her empathy and love of educating and empowering others to help families and children thrive both inside the hospital and out.

This PAEDS Small Talk mini series is a little different to our regular programming. Instead of chatting with parents and children, in light of International nurses Day on the 12th of May - we are going to speak with 5 incredible paediatric nurses who will share their journey into becoming children's nurses and the diverse roles that they have now. We discuss the amazing highs and the very real lows of nursing along with some nurses humour along the way (blanket trigger warning for all the body fluids here!). This episode we talk with Isabelle about her journey from a Science degree to paediatric ICU and then all the way to leadership where she applies a 'human centred' philosophy.

In this heartwarming episode of Paeds Small Talk, we delve into the extraordinary lives of Sarah Hunstead and her daughter, Izzy, offering an intimate glimpse into their daily challenges and victories. Sarah, is a seasoned paediatric nurse with a rich background in paediatric emergency care and founder of CPR Kids , and shares her unexpected journey into the world of autism, sensory processing disorder, and OCD, after her daughter Izzy's diagnosis. Through their story, you  will discover the nuances of navigating the healthcare system from a dual perspective: a professional within and a parent in need. This episode breaks down the walls of misunderstanding surrounding neurodiversity, with Izzy providing vibrant insight into her world, her interests, and how she copes with her diagnosis in her everyday life. From discussing the impact of societal expectations to offering a fresh viewpoint on autism representation in the media, Sarah and Izzy's narrative is of understanding, and empowerment for parents and professionals  individuals navigating similar paths.Their honest discussions on the importance of finding the right healthcare partners, embracing one's identity, and fostering a supportive community encapsulate the essence of strength in adversity. Tune in to be inspired, educated, and moved by their journey, shedding light on the vibrant spectrum of neurodiversity and the special bond between a mother and her daughter.We give a shout out to Yellow Lady Bugs in this episode and would also like to link to Doctors Without Boarders  who are working in the conflict in Gaza

In part two of our special Sweetheart Day episodes with Maddie she is sharing her story of York, who has aortic stenosis, a severe heart condition. She poignantly recounts the heart-wrenching moment when she and her husband, Josh, had to perform CPR on York, they affirm the profound bond they share with the PICU staff and the exceptional medical team. Despite the hurdles, York's story radiates hope and resilience, attesting to the strength of the human spirit when faced with the unimaginable. This episode sends a shoutout to Heart Kids, an Australian charity that supports and advocates for those affected by congenital heart disease.Heart KidsPAEDS Education

This episode is part one of two episodes where we have a heartfelt conversation with Maddi, the mother of York, who born with a congenital heart defect known as Aortic Stenosis. Maddi's recounts her unfathomable journey through York's diagnosis, multiple surgeries, and the struggles of reconciling everyday life with living in the hospital. Maddi gives us a raw, intimate look into the challenges and triumphs of navigating the world of paediatric intensive care. In honor of Feb 14th, Sweetheart Day, this episode serves as a tribute to little heart warriors and their families, shedding light on their strength, resilience, and the often-underrecognised situations they face. Our charity shout out goes to Heart Kidsy who support families and children with Congenital Heart Disease.Trigger warning for late term medical abortion and childhood death in this episode.We talk about a few advanced concepts in this episode, if your interested in finding out more, here are some good places to start...Aortic StenosisHypoplastic Left Heart Syndrome'ECMO' - Extra Corporeal Membrane Oxygenation or Extra Corporeal Life SupportVentilation support'The Oscillator' - High Frequency Oscillation Ventilation

Turning 18 and becoming an adult is a big deal in anyones life. In the health system when you have a disability, illness or complex medical condition you move from paediatric centric care to adult care at around this time. This means that not only the model of care changes but the person is now potentially more responsible for their own health decisions than they were before.In this episode we chat with Nat who has cerebral palsy how can we better support individuals and families to move from paediatric to adult models of care. We also listen to Nat reflect on her memories as a child growing up with a disability. This episode does discuss the misuse of benzodiazepines, and we direct you to reconnexion if you would like further information regarding benzodiazepine dependence, withdrawal, anxiety, insomnia or depressionA shout out to the Cerebral Palsy Support Network a Not For Profit disability service provider in Victoria.

In this episode we are speaking with Kate who is a mum of 3. Her eldest child was diagnosed with Autism Spectrum Disorder (ASD) early in life. Kate describes her experiences the diagnosis in New Zealand, the struggle of acceptance, the lack of immediate support post-diagnosis, and her pursuit to ensure her daughter reaches her full potential. We also explore how Kate juggles her many balls, including parenting her other children, living in an isolated farming area in NZ and running her own business DediKate. The discussion also reveals the importance of validating feelings, seeking appropriate resources, and building supportive networks.We give a shout out to the Isolated Children's Parents Association www.icpa.com.auYou can also check out Kates business http://kateiveryfitness.comSome resources for Autism in NZ  http://altogetherautism.org.nz and http://autimnz.org.nz/support-from-us/

We are back for part two with our chat with Mim!In this episode, Mim discusses her second pregnancy and birth which was a little earlier than her first. Although she had some experience of prematurity the first time around and knew a little of what to expect from a NICU admission, Covid struck! Being a parent to a sick child in NICU, while your husband and other child are a few hours away, with Covid restrictions thrown in the mix, its not easy that's for sure.Little Griffin (and we mean little!) had a bit of a complicated journey home, and Mim and her husband found themselves back and forth a few times having conversations about end of life care. But Griffin has surpassed all odds and lives at home now with the support of a loving care team that help Mim and her family navigate life with a child ventilated full time via a tracheostomy. But the best part is hearing about Griffin and his brother Spencers beautiful sibling relationship, the unique and amazing individuals they are, and how Mim, her family and their support team plan to help this dynamic duo continue to have their zest for life and help them take on the world.Shout out again to the fantastic Heart Felt Photography http://heartfelt.org.au

Mim had quite a long journey to parenthood, with struggles with infertility. When she and her husband finally did welcome their first born into the world it was a bit earlier than they had planned at 27 weeks gestation. She discusses the experience of being a first time Mum to a new baby in the NICU and brings with it her insights as being a nurse herself. This is such a unique episode with some important discussions around how we hold space for grief and feelings when things are tough. This is part one of two episodes.This episode we shout out to Heartfelt Photography a volunteer organisation of photographers that give the gift of special memories to families who have experienced still birth or have children with serious life threatening illness.Some resources for parents with babies in the NICU or Special Care and for pregnancy loss; Miracle Babies Lifes Little TreasuresThe Pink Elephants Support NetworkSands

Maddi found herself stepping into a carer role at the age of 13 while she watched as her mother became more affected by the symptoms associated with Huntingtons Disease. She discusses what that role looks like to a teen who is still finding their own purpose and identify in the world and yet dealing with concepts beyond their years. Her bond with her mother and the joy to have had the beautiful relationship they shared shine through the difficulties of loosing her too soon. This episode we talk about Huntington's Victoria and Motherless Daughters Australia if you also would like some resources to support unpaid carers check out Carers Australia or of siblings of children with complex medical needs - check out Siblings Australia 

When Claire was  pregnant with her second child, antenatal scans revealed that he had a congenital heart disease and a high chance of a Trisomy 21. Whilst she and her family were coming to terms with this information she went into labour at 37 weeks and little Max was rushed across to PICU for his first open heart surgery.  We spoke with Claire about the whirlwind and rollercoaster that having a child in the PICU from birth for heart surgery can entail and also the added challenge of doing this in the peak of COVID restrictions and lockdowns in 2020.Claire shares such an amazing insight on not only her experience as a mother, but that of Max and the whole family during this unpredictable time in their lives. We are even blessed with a guest appearance from Max part way through the poddy.One of Claires big take homes is how we all work together as a team when a child is sick in hospital to work towards that shared goal of the child's best interests. We give a shout out and donation from this episode to the marvellous twenty one gifts twentyonegifts.com and the Abbey Solo Foundation www.abbeysolofoundation.org head over to check out these amazing NFP and throw your support behind their amazing visions.If you would like to learn more about T21 you can head to downsyndrome.org.au and lots of details about congenital heart disease at heart kids.org.au

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.

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.ResourcesSCN2ATRAPS

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/

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 podcasthttps://rarechromo.orgKates chosen charityhttps://www.thesisterhoodproject.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 & SarahPAEDS