The Rare and Resilient - ONE in 5000 Podcast

Episode 22 - Interview with Denise - Mother of 19 year old son Wilson from USA who was born with IA/ARM

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 of the impact beautiful dog named Amara had on Wilson's life and became his best friend and has provided great comfort. This story, as difficult as it is to hear at times will ultimately show that the human spirit can succeed against intolerable odds at times and the absolute humanitarian nature of an incredible family.

Episode 21 - Interview with Suzie - Mother of 10 year old son Kaden from USA who was born with IA/ARM.

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 support they receive from his school and the importance of a mental health professional to assist with coping strategies. 

Episode 20 - Interview with Cassandra - Mother of 22 mth old son Malachi from USA, who was born with IA/ARM and Down Syndrome

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 cases with 95% of children also diagnosed with Down Syndrome. Cassandra gives us an incredible insight into the continual challenges Malachi has endured and the passion she has for advocating for a very special community. I know Malachi's story will touch the hearts of us all. 

Episode 19 - Interview with Dr Marc Levitt, Chief of Colorectal & Pelvic Reconstruction, Children‘s National Hospital, Washington DC USA

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 approach to care for IA/ARM patients. We also discuss a wide variety of topics which will be of great interest to families and patients (e.g. Initial diagnosis, Bowel management, Laxatives/Enemas, Malone/ACE, PSARP, Stoma's, Dilations, Redo surgery, potty training & transitional care).

 

Episode 18 - Interview with Assoc. Prof. Rebecca Rentea - Pediatric Colorectal Surgeon - Children‘s Mercy Hospital Kansas City USA

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 patients from age 0-21 under the four categories of Infancy (neonatal), Children, Adolescents and Young adults. The study can be found under the name of "Psychosocial factors affecting quality of life in patients with Anorectal Malformation and Hirschsprung Disease - a systematic qualitative review." Published 20th May 2021. 

 

 

 

 

 

Episode 17 - Interview with Dr Bruno Martinez, Pediatric Colorectal Surgeon - Moctezuma Children‘s Hospital, Mexico City, Mexico

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 gastrointestinal congenital anomalies at 264 hospitals in 74  low, middle and high income countries: a multicentre, international, prospective cohort study" which was published on "The Lancet" Volume 398, Issue 10297, P325-339, July 24, 2021. Dr Martinez discusses the key findings from the study which will be of enormous benefits to conditions such as IA/ARM, which was included as one of the anomalies studied. 

Episode 16 - Interview with Jack from Canada, 11 years old born with IA/ARM and his mother Mary

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 adjusting to school and wonderful supports they have in place. With kids like Jack as role models for other IA/ARM kids, our community is very fortunate. 

Episode 15 - Interview with Katrina, 63 years old from England who was born with IA/ARM (Cloaca).

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 lived experiences impacted her career as a Nurse and how she provided care to her parents. We are very fortunate to be able to share the story of an incredibly remarkable and resilient lady.

Episode 14 - Interview with Mark, father of a 3 1/2 year son from USA born with IA/ARM, Neurogenic Bladder & Single Kidney.

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 they have faced getting the right care for their son with complex medical issues. 

 

 

 

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Episode 13 - Interview with Laura & Ryan, parents of 9 year old Peyton from USA who was born with IA/ARM (Cloaca)

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 daughter with medical challenges as well as balancing the needs of their three sons. Laura, who is an admin of the USA IA/ARM group and has been such a wonderful support to so many families in our community shares her passion in assisting others who are on the same journey and let them know they are not alone.