The Rare and Resilient - ONE in 5000 Podcast

Episode 31 - Interview with Dr Alberto Pena - Pioneer of PSARP surgery

For episode 31, we are honoured to be joined by Dr Alberto Pena, from the International Center for Colorectal and Urological Care, Children's Hospital Colorado, USA. Dr Pena is an iconic figure in the field of Pediatric Colorectal surgery and is the pioneer of the groundbreaking PSARP surgery, first performed in 1980 which revolutionised treatment of IA/ARM patients. We talk about his remarkable life's journey as a surgeon and how he started his career in Mexico and due to the illness of his son with a severe congenital condition which led him to the USA and his passion in pediatric surgery began. Dr Pena is a truly remarkable person and I encourage all to take the time to listen to this podcast where you will understand how special he is and the love and care he has for his patients and families as well as teaching other doctors all over the world.

Episode 30 - Interview with Christina from Washington State USA, mother of 3 year old Eliza who was born with IA/ARM

For episode 30 we are joined by Christina from Washington State, USA, who is the mother of 3 year old Eliza. She shares their journey from the initial time her IA/ARM was not diagnosed at birth, through all the surgeries and emotions she endured as a parent, as well as finding the right bowel management regime for Eliza. Most importantly, she shares with us how extremely proud she is of her brave and beautiful daughter and how nothing she endured has stopped her from smiling and being a very active child.

Episode 29 - Interview with Dr Andrea Bischoff, Director of International Center for Colorectal & Urological Care - Children’s Hospital Colorado, USA

For episode 29, we are joined by Dr Andrea Bischoff, Director of the International Center for Colorectal and Urological Care, Children's Hospital Colorado, USA. We discuss the start of her career in Brazil and choosing to specialise in pediatric surgery which which led her to Cincinnati Children's Hospital USA in 2007, where she met Dr Alberto Pena and started her passion to care for children with colorectal conditions. in 2016, Dr Pena and Dr Bischoff moved to Colorado and established the multidisciplinary centre. We also discuss many topics of interest including Prenatal diagnosis; Initial treatment; Bowel Management Week; Colonic Manometry; Contrast Enemas; Constipation and Diarrhoea in IA/ARM kids; Skincare; Malone Procedure; Castile Soap & Glycerin and also provides information of their team and the services they provide. 

Episode 28 - Interview with Daria from Spain, Mother of 5 year old Daniel born with IA/ARM & Tracheo-Esophageal fistula,

For episode 28, we are joined by Daria from Barcelona, Spain, who is the mother of 5 year old Daniel. She shares their journey of him being born with IA/ARM, Tracheo-Esophageal Fistula and Tethered Cord. Daniel was born in the Prague, Czech Republic and three years ago Daria and her family made the massive decision to move overseas to Spain to ensure Daniel was given the best opportunities for his medical and educational needs. Daria also shares her passion for raising awareness through her artwork and how Daniel got up in front of his school class and explained his conditions, which is so brave and amazing at his tender age.

Episode 27, Interview with Emma, a 47 year old IA/ARM Adult from Queensland, Australia

For episode 27, we are joined by Emma from Queensland, Australia, who is 47 years old. Emma was born with IA/ARM and also was has six conditions relating to VACTERL Association (not L). Her story is truly extraordinary as she shares her journey of dealing with the immense health challenges she has encountered throughout her life, but nothing has stopped Emma. She graduated University and became a Radiographer, travelled the world, got married and is a mother to a 12 year old daughter. In 2020, Emma was diagnosed with cancer (Multiple Myeloma), and we discuss how this has impacted on her life. Emma is truly a remarkable woman and I'm sure you will be inspired and touched by her story and her immensley positive attitude to life.

Episode 26 - Interview with Angel, Mother of 5 year old son Wolf from Australia who was born withIA/ARM

For episode 26 we are joined by Angel from Queensland Australia, who is the mother of 5 year old Wolf. She shares their journey of him being born with IA/ARM and having to have life saving colorectal and heart surgery in the first week of his life. Wolf got his MACE/Malone at an early age and Angel details their daily routine which has enabled him to adapt to school as well as his love for participating in sport, where he recently won medals in Jujitsu. We also discuss how proud Angel is of her Indigenous heritage and how she pays respect to her culture by now creating her own incredible Aboriginal artwork. 

Episode 25 - Interview with Carlo, a 37 year old IA/ARM Adult from New York, USA

For episode 25, we are joined by Carlo from New York, USA, who is 37 years old and was born with IA/ARM. Carlo shares his journey of how he navigated his school years and the difficulties he endured. But he has never let his birth defect define him and he has such a positive mindset and acceptance of his condition. It has not prevented him from doing anything in his life, including working all his adult life and getting married in 2021. Carlo's story is one which will inspire parents in our community who are unsure of what the future may hold for their IA/ARM child. 

Episode 24 - Interview with Billie - Mother of 14 month old Jimmy from England who was born with IA/ARM

For episode 24, we are joined by Billie from England, who is the mother of 14 month old year Jimmy, who was born with IA/ARM and also hypospadias, which is a recognised associated issue in some IA/ARM boys. Billie details how they were first told that their unborn baby was a girl, then advised he was a boy by a different Sonographer within a month. Then at birth the doctor told them that they needed to do further examination as they were unsure of the gender, and once recognised as a boy, they were then told of his IA/ARM diagnosis. Billie shares their journey with Jimmy who makes some "guest appearances" in a very emotional interview, which I know will resonate with so many families. 

Episode 23 (Part 2) Interview with Dr Christina Low Kapalu, Pediatric Psychologist, Children’s Mercy Hospital Kansas City, USA.

As a follow-up to the Episode 23 (Part 1) discussion with Pediatric Psychologist Dr Christina Low-Kapalu from Children's Mercy Hospital, Dr Low-Kapalu shares some insight into suicidal ideation in teens and children in this short recording. As medical trauma causes deeply sad feelings, in rare instances, trauma can even lead to thoughts of suicide, and it’s very important to notice the warning signs.  Please note that due to the topic, this clip contains sensitive material.

Episode 23 (Part 1) - Interview with Dr Christina Low Kapalu - Pediatric Psychologist - Children‘s Mercy Hospital, Kansas City, USA

For episode 23 (Part 1) we are joined by Dr Christina Low Kapalu, Pediatric Psychologist, Comprehensive Colorectal Centre, Children's Mercy Hospital Kansas City, USA. We asked families in our IA/ARM community to pose questions and issues that they wish to be addressed on issues regarding the mental health and behavioural aspects of a child/adolescent born with IA/ARM, as well as the impacts on parents and siblings. Dr Low Kapalu answers all the questions raised and also shares her vast experience in dealing with IA/ARM patients and families and the strategies she helps to improve quality of life. This podcast will be of great benefit  IA/ARM parents, families and also importantly to educators of a IA/ARM child/adolescent.