The Rare and Resilient - ONE in 5000 Podcast

For episode 50, we are joined by medical professionals, Dr Alessandra Gasior, Sarah Driesbach, Erin Gates from Nationwide Children's "Center for Colorectal and Pelvic Reconstruction Service" (CCPR) & Laura Ward from Ohio State University University Wexner Medical Center (OSU) to discuss "Pelvic Floor Physical Therapy" (PFPT) for IA/ARM patients (children and adults.) We discuss questions raised by parents of children and adults...

For episode 49, we are joined by Monica from New Jersey USA, who is a mother of four, with her youngest son, 18 month old Jordan, who was born with IA/ARM, as well associated issues. Monica shares the emotional journey she has been on with Jordan since he was born which has required multiple surgeries which included a distressing issue where she followed her motherly instincts when Jordan was unwell which resulted in Jordan having ...

For episode 48, we are joined by Sharone from New York USA, who is the mother of her eight year old son David, who was born with IA/ARM, as well as VACTERL Association. Sharone shares her unique perspective as being a long term NICU Nurse, then becoming a NICU parent after David was born. We also hear how David has navigated his journey of having constant accidents and then finally finding a bowel regime that has been life changing...

For episode 47, we are joined by Dr Alessandra Gasior, the first colorectal surgeon in the world to be fellowship trained in both pediatric and adult colorectal surgery.  Dr Gasior is the medical director of the of Colorectal Transitional Care at Nationwide Children's Hospital as well as a surgeon with the Ohio State University Medical Centre. We discuss the reason why she chose her speciality in colorectal conditions and shares he...

For episode 46, we are joined by Melissa from Bristol, England, who is the mother of 3 & 1/2 year old daughter Halle who was born with IA/ARM, TOF and associated issues. Melissa shares their journey of dealing with these two major issues at birth which both required urgent surgeries. Halle then had further complications that required more surgery and eventually needing a TPN (which is IV artificial feeding) to allow her body to fun...

For episode 45, we are joined by Lily from Washington State, USA, who is 19 years old and was born with IA/ARM, as well as associated VACTERL issues. Lily shares her truly remarkable story of being born in China, and then taken to an orphanage and eventually taken in by a foster family at nine months old until the age of five and a half when she was adopted by an American family. We discuss the lack of specialised medical care in C...

For episode 44, we are joined by Jess from Shropshire, England, who is the mother of 3 year old (almost 4) daughter Felicity who was born with IA/ARM. Jess shares their journey which started with her IA/ARM not being diagnosed for six days after Felicity becoming very ill and required urgent hospitalisation and subsequent surgery. We then discuss the challenges IA/ARM parents must navigate (i.e. Stoma Bag; Dilations; Bowel Manageme...

For episode 43, we are joined by Taylorann from Ohio, USA, who is 22 years old and was born with IA/ARM, as well as Neurogenic Bladder and associated VACTERL issues. Taylorann shares with us, her extraordinary life story of dealing with the physical and emotional struggles she has endured and being told at an early age that she was "the 1% of the 1%" due to the complicated nature of her health issues and how it impacted her ability...

For episode 42, we are joined by Hattie from Peterborough, England, who is the mother of nearly 4 year old daughter Willow who was diagnosed with Anal Stenosis at birth. But after continued issues with her bowels and Hattie pursuing research and further medical opinion, Willow was diagnosed at the age of 3 with the congenital condition, called  “Currarino Syndrome” which is associated with IA/ARM. Willow at the same time was found ...

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 shar...

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...

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 dail...

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 th...

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 talk...

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...

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 retur...

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 ...

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 pr...

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 sh...