The Rare and Resilient - ONE in 5000 Podcast

Episode 41 - Interview with Holly & Matt from Florida USA, parents of 18 mth old Edison, who was born with IA/ARM

For episode 41, we are joined by Holly and Matt from Florida, USA who are the parents of their 18 month old son Edison who was born with IA/ARM as well as a congenital heart condition and associated VACterL issues. Holly takes us through their journey of initial heart diagnosis during her pregnancy, then the shock of the IA/ARM at birth and then having to deal with airway issues and navigating his multiple surgeries. Matt then shares his perspective as a Dad and how his personal medical experiences has enabled him to support Holly and advocate for Edison. 

Episode 40 - Interview with Bristol from Tennessee USA, mother of 2 year old Roman who was born with IA/ARM

For episode 40, we are joined by Bristol from Tennessee, USA who is the mother of two and her youngest son Roman who is two and a half was born with IA/ARM. Bristol shares her journey with Roman and details the delays in his surgeries which has left him still with his Stoma Bag and her questioning whether to go ahead with the surgery or keep his colostomy as things are going really for him at the moment. We also discuss a video she made showing Roman pretending she also had a bag and how it’s been viewed over 1.3 millions times, and his special relationship with his “Ostomy Bear.”

Episode 39 - Interview with Joe, 32 year old IA/ARM adult from Durham County, England

For episode 39, we are joined by Joe (aka @MrMagicToilet on social media) from Durham County, England, who is 32 years old and was born with IA/ARM. Joe has lived his entire life hiding his IA/ARM, until a few months ago when he decided to open up to his friends and the world about his journey living with his congenital condition. He has had a ACE/Malone since five years of age and he talks openly about how it has affected his daily life, as well as sharing with us the physical and mental challenges he has endured. Joe also details how his condition impacts on his relationship with his fiancé and three daughters.

Episode 38 - Interview with Kari from South Carolina USA, mother of 14 month old Luca who was born with IA/ARM

For episode 38, we are joined by Kari from South Carolina, USA who is a mother of two children with her 14 month old son Luca born with IA/ARM as well as associated VACTERL conditions. Kari shares with us the incredible challenges Luca faced in his initial months after his birth and the subsequent investigation finding he had a major issue due to his initial colostomy surgery, which then required revision surgery. Kari then made the decision to seek specialised care for Luca which led her to transfer his care to a dedicated multidisciplinary Colorectal centre, which has resulted in a much improved quality of life for Luca. 

 

 

Episode 37 - Interview with Naomi from Yorkshire UK, mother of 3 year old Ralph who was born with IA/ARM

For episode 37, we are joined by Naomi from Yorkshire, UK who is the mother of four and her youngest son Ralph who has just turned three years old was born with IA/ARM. Naomi is a theatre nurse, and also has experience as a stoma care nurse, but she details how nothing could prepare her for the experiences of navigating the journey of dealing with the complexities of having her own child born with a medical condition. She also talks openly on why she feels like she has to justify why Ralph is still in nappies (diapers) which I know will resonate with so many parents in our community. 

Episode 36 - Interview with Nat from Melbourne, Australia, mother of 18 month old Levi who was born with IA/ARM

For episode 36 we are joined by Nat from Melbourne, Australia, who is the mother of 18 month old Levi. She shares their journey of him being born with IA/ARM during COVID-19. Levi had his PSARP at only two months and his reversal at four months due to the uncertainty caused by Covid. Nat details how her family and medical team navigated their way through an incredibly difficult time with no access to family support due to lockdowns. 

Episode 35 - Interview with Dr Carlos Reck-Borneo, Pediatric Colorectal Surgeon from Landesklinikum Mödling, Lower Austria

For episode 35, we are joined by Dr Carlos Reck-Borneo, Chief of Pediatric Surgery, Landesklinikum Mödling Hospital, Lower Austria. He is highly regarded as one of the worlds leading paediatric colorectal surgeons specialising in congenital colorectal conditions and has a remarkable story. He began his career in his home country of Ecuador, before moving to Austria and then spent time in USA working with Dr Marc Levitt before returning to Austria and establishing a dedicated colorectal center at his current hospital. Carlos also has been instrumental in humanitarian work treating children in Honduras and Peru. Also Carlos discusses a revolutionary project in the works regarding utilising an "APP" for patients and families for Bowel Management programs. 

 

 

 

Episode 34 - Interview with Noah (14 years old) who was born with IA/ARM and his mother Amy from Ohio, USA

For episode 34, we are joined by Noah, who is 14 years old and was born with IA/ARM and his mother Amy as they both talk openly about Noah’s and their family’s journey. Noah is such a charismatic and confident boy who shares how he has coped with the challenges he has faced with his health and how he went from wanting to keep his condition private to now being public about it. Amy also provides a great insight into how they had to navigate their way through the medical system when Noah was younger which finally found them at a dedicated colorectal center and where Noah had life-changing re-do surgeries and started on a bowel management program that has changed Noah’s quality of life in such a positive way.

Episode 33 - Interview with Lori, an IA/ARM mother and Executive Director of Pull-Thru Network

For episode 33, we are joined by Lori, a mother of a IA/ARM adult daughter who shares her experiences of navigating her families journey from a pre-internet time where the information was extremely limited. They sought out the best medical treatment and care available which led Lori to becoming an active member of the Pull-Thru Network and subsequent role as the Executive Director who she has held for many years. Lori is able to provide a very unique perspective, as she details the many experiences with pediatric care and the transition to adult patient care, and dealing with so many families and medical professionals in the IA/ARM community.

Episode 32 - Interview with Maddie, 25 years old who was born with IA/ARM (Cloaca) from USA

For episode 32, we are joined by Maddie from USA who is 25 years old. Maddie was born with IA/ARM (Cloaca), as well as many associated issues. Her story is a remarkable one, as she details how she has talked openly about her health issues all her life. When she was just a toddler she decided she wanted to be a Doctor and is now fulfilling that dream and is attending medical school. Maddie shares with us the incredible challenges she has faced with her health over the last few years, but it has not stopped her. Her story is one that will give hope to so many young girls born with Cloaca, and also inspire everyone who listens to it, she is an extraordinary young woman with an amazing family.