The Rare and Resilient - ONE in 5000 Podcast

Episode 51 - Interview with Sinead from Dublin, Ireland, mother of 11 year old Matthew born with IA/ARM

For episode 51, we are joined by Sinead from Dublin, Ireland, who is the mother of her 11 year old son Matthew, who was born with IA/ARM. Sinead shares the journey that they have been on and hear about the experiences of dealing with IA/ARM and the immense challenges they faced at times. We also hear how a visit to hospital when Matthew was ready to start school was life changing due to the care and support from a Nurse. I know this episode will provide an incredible insight into the impact IA/ARM has on lives, but most of all show that no matter the challenges, you can get through it with a parents love and a child's incredible resilience. 

Episode 50 - Interview with medical professionals on Pelvic Floor Physical Therapy (PFPT) for IA/ARM patients (children & adults)

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 living with IA/ARM which cover all aspects of PFPT which I know listeners will find very informative and be of great interest in the positive outcomes. 

Episode 49 - Interview with Monica from New Jersey USA, mother of 18 mth old Jordon, born with IA/ARM

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 emergency life-saving surgery.

Episode 48 - Interview with Sharone from New York USA, mother of eight year old David, born with IA/ARM

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 him. Also, we discuss how David was diagnosed with a tethered cord at the age of eight which required subsequent surgery.

Episode 47 - Interview with Dr Alessandra Gasior, Pediatric & Adult Colorectal Surgeon at Nationwide Children’s & Ohio State University Medical Centre

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 her unique perspective of treating children, adolescent and adult IA/ARM patients, and her passion in transitional care to ensure patients now can transition from pediatric to adult care under the same doctor. We discuss many topics that I know will be of great interest to patients, families and medical professionals. 

Episode 46 - Interview with Melissa from Bristol, England, mother of 3 & 1/2 year old Halle, born with IA/ARM

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 function. Their story is one of absolute family commitment and inspiration to maintain the health of Halle and give her the best quality of life possible.

Episode 45 - Interview with Lily, 19 year old IA/ARM adult from Washington State, USA

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 China and the ramifications of this when she got to the USA and had to endure many surgeries for her medical issues. Lily is now in college studying to be a pediatric nurse and I'm sure everyone will be inspired by this wonderful young woman's incredible journey and positive outlook on life.

Episode 44 - Interview with Jess from Shropshire, England, mother of 3 year old (almost 4) Felicity, born with IA/ARM

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 Management & Potty Training etc.) Jess also details how Felicity at 3 years of age, remarkably administers her own suppositories so she can go to the potty.

Episode 43 - Interview with Taylorann, 22 year old IA/ARM adult from Ohio, USA

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 to attend school. We also discuss the very important topic of how her health has impacted on her siblings. I'm sure everyone who listens to this podcast will be in awe of this wonderful young lady.

Episode 42 - Interview with Hattie from Peterborough England, mother of nearly 4 year old Willow, born with Anal Stenosis (IA/ARM)

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 to have a “Tethered Cord” which required major surgery.