The Rare and Resilient - ONE in 5000 Podcast

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 partici...

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...

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 need...

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 sig...

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 par...

For episode 22, we are joined by Denise from Indiana USA, as she shares the extraordinary story of her son Wilson, who is now 19 years old and was born with IA/ARM in the Dominican Republic. Wilson's story is one that shows how cruel our world can be, but also, how incredibly kind it can be when a family opens their home and consequently adopt child and provides immense love and care. We also hear...

For episode 21 we are joined by Suzie from Kansas, USA who is the mother of 10 year old Kaden. She shares their journey of him being born with IA/ARM and how the family made the decision to travel interstate to Cincinnati Children's Colorectal Centre to have the PSARP surgery. She also details how having the Malone/ACE surgery has improved Kaden's life significantly, as well as the wonderful suppo...

For Episode 20, to celebrate Down Syndrome Awareness month we are joined by Cassandra from Florida USA who shares the story of her beautiful son 22 month old Malachi who was born with "Imperforate Anus/Anorectal Malformation without fistula" and Down Syndrome (Trisomy 21). The classification of "IA/ARM without fistula" is a unique characteristic which is found in only 5% of Anorectal Malformations...

For episode 19, we are joined by Dr Marc Levitt MD, Chief of Colorectal & Pelvic Reconstruction, Children's National Hospital, Washington DC USA who is internationally recognised as specialising in Anorectal Malformation patients. We chat about how he became a pediatric colorectal surgeon and his passion for training surgeons around the world and his advocacy for a need for a multidisciplinary app...

For episode 18, we are joined Assoc. Prof. Rebecca Rentea, Colorectal Pediatric Surgeon and Director, Comprehensive Colorectal Centre, Children's Mercy Hospital Kansas City USA. We discuss a very important study conducted by specialists at the "Comprehensive Colorectal Center" as they explored the psychosocial, emotional & behavioral factors which affect the quality of life for IA/ARM & HD patient...

For episode 17, we are joined Dr Bruno Martinez, Pediatric Colorectal Surgeon from Moctezuma Children's Hospital, Mexico City, Mexico. He discusses how his patients are from the poorest parts of Mexico City, who face great challenges with no social security benefits or insurance cover. Dr Martinez was also on the Organising Committee of the "Global PaedSurg" cohort study called "Mortality from gas...

For episode 16, we are joined by 11 year old Jack and his mother Mary from Canada. Jack is such an extraordinary boy who was born with IA/ARM and associated VACTERL issues and decided he wanted to share his story in the book. He is mature beyond his years as he shares his story and his mother Mary gives us an insight in to the many challenges they have faced together from his early years to the ad...

For episode 15, we are joined by an IA/ARM (Cloaca) adult, Katrina from England, who is 63 years old. Katrina takes us on a very emotional journey as she shares her story of living with her congenital anomalies (Cloaca, T.O.F, Bicornuate Uterus & Extra Thumb) and how they have shaped her life through childhood, adolescence and adulthood with honesty and openness. Katrina also discusses how her liv...

For episode 14 we are joined Mark from USA, who is the Dad of a 3 1/2 year old son who was born with IA/ARM, Neurogenic Bladder, Single Kidney and also diagnosed with a Tethered Cord at five months of age. Mark shares his personal experience from a fathers perspective, and details the journey he and his wife Holly have been on to get the specialised care for their son and details the challenges th...

For episode 13 we are joined by Ryan & Laura from USA, who are the parents of 9 year old Peyton, who was born with IA/ARM (Cloaca). They share their journey of how Laura and Peyton have had to travel interstate many times to get expert medical care due to the complexity of her condition and detail the impacts these trips had on their other children. Ryan shares his perspective as a father of a dau...

For episode 12, we are very fortunate to be joined by one of the world's leading IA/ARM Pediatric Surgeons, Dr Richard Wood, who is the Chief of the Center of Colorectal & Pelvic Reconstruction (CCPR), Nationwide Children's Hospital, Columbus, Ohio, USA. Richard shares really important research information and discusses a wide spectrum of topics (Dilations; Re-do surgery; MACE (Malone); Cecostomy;...

For episode 11 we are joined by Soma from Iraq (Kurdistan region), who is the mother of two and half year old Kaze, who was born with IA/ARM (Cloaca). She shares their remarkable journey of how she had to travel to Germany alone with her daughter to get life changing surgery as her husband and eldest daughter were refused visas, and their family were apart for three months. Her story will touch yo...

For this episode we are joined by Chloe from Queensland, Australia, who is the mother of her beautiful 14-month-old daughter Raven. She shares their IA/ARM journey and discusses how her and her husband Ben committed to a wonderful fundraising initiative called Run4Raven, where they ran 5000 minutes in one month to raise awareness and understanding of IA/ARM in the general community and raise funds...

For episode 9, to celebrate "World Continence Week" we are joined by Wes from Colorado USA, who is 26 years old. Wes shares his story about living with bowel incontinence and how this has not held him back from graduating medical school to pursue his dream of becoming a Doctor. His story is one of absolute commitment under adversity with wonderful support from his family.

For episode 8 we are joined by Verlie from Perth, Australia who is the mother of an amazing young man, 8 year old Dexter. She shares their truly remarkable journey of him being born with IA/ARM and getting a Malone/ACE at the age of 3, then having open heart surgery at the age of 4 and being diagnosed with Autism and ADHD at the age of 7. In the last 12 months Dexter has also been diagnosed with E...

For episode 7, we are joined by an IA/ARM adult, Sophie from Arizona, USA who is 25 years old. Sophie shares her story with us and we hear how she has fulfilled her lifelong dream of becoming a Nurse and how that enabled her to travel to Africa to help care and treat young African children. Her story will inspire those who hear it and make a difference to so many young girls who were born with IA/...

For episode 6, we are joined by a wonderful family from New Jersey, USA. Aiden (14 years old), who was born with IA/ARM and his parents Dave & Michelle all share their respective personal experiences and their journey as a family.

For episode 5 we are joined by Blake (7 years old) from Texas USA, who reads his short story of living with IA/ARM. Also, his twin brother Austin talks about how he supports his brother. Their wonderful mother Amanda, then takes us on an emotional journey detailing their family story and gives us an insight into the battles she has faced dealing with the USA Healthcare system in trying to get Blak...

For this episode we are joined by Rebecca from Alaska, USA, who is the mother of two year old Jaxson. She shares their IA/ARM journey and how her family have had to travel interstate to get specialised care and treatment for their son who has had to face many challenges in his short life. 

For this episode we are joined by Aimee from Invercargill, New Zealand, who is the mother of two year old Madison (Madi). She shares their IA/ARM journey and also discusses the current challenges her family are facing in getting ongoing care for Madi, who makes a very special appearance on the podcast.