Most parents and families have never heard of oesophageal atresia (OA) or tracheoesophageal fistula (TOF) and the birth of a child with one or both of those conditions can understandably cause stress of the unknown. The OA Kid’s Story cartoon book aims to be an invaluable resource for families when talking to their child with OA-TOF.
When Lily came into the world in mid-2020, kicking and screaming like any other newborn, she seemed perfectly healthy. Even the attending doctors and nurses couldn’t tell, at first, that anything was wrong. But after Lily spluttered and gasped for air during her first attempts at feeding, it soon became clear she had a life-threatening condition.
“It was really distressing,” recalls mum Lynsey. “Lily couldn’t feed, she went blue and I thought she might choke. They rushed her off for an x-ray, then a few more tests and the diagnosis came pretty quickly after that."
“OA - oesophageal atresia. I’d never heard of it before.”
OA-TOF is a rare disease affecting 1 in 2,500 children around the world. At birth, this condition causes a lack of continuity in the food pipe and as a result, these children cannot eat. They also often have an abnormal connection between their food pipe and breathing tube, and therefore often struggle to breathe properly. Over 90% of these children survive due to modern medical interventions, but almost all of them suffer significant respiratory and gastrointestinal complications.
Although fact sheets are provided to parents when a child with OA-TOF is born, there are currently no books to assist parents in explaining the condition to their child or to the extended family. Dr Usha Krishan, Director of OA-TOF Clinic at Sydney Children’s Hospital, Randwick (SCH), wanted to produce an easy-to read comic style book about OA, as she’d seen done for more common medical conditions such as diabetes and epilepsy.
“There is no available book currently in Australia or overseas for this rare disease as a result of which, these children with OA and their families are struggling on a daily basis to explain the chronic disease to their child. I think this comic book would have a difference in their day-to-day life because once they understand their condition better, they’re more likely to look after themselves better,” says Dr Usha Krishan.
Dr Vincent Varjavandi is a famous published author and Dr Usha Krishnan has previously successfully worked with Medikidz in developing comic information books to explain other chronic diseases. The OA-TOF team at SCH also works collaboratively with the parent support group for this condition (OARA) in Australia. Sydney Children’s Hospital, Randwick is uniquely placed to develop an OA-TOF comic book as it is currently the only children’s hospital in Australia with a dedicated multidisciplinary OA-TOF clinic.
With the help of one of the Foundation’s long-term supporters and the Greenlight Program, Dr Krishan collaborated with MediKidz, to create the OA Kid’s Story comic book. The OA Kid’s Story explains OA-TOF and its complications, investigations, treatments and medical and surgical procedures to young children in a superhero comic-style format. The book helps children and families can gain a better understanding of the condition, reducing anxiety and stress and improving quality of life.
The book will be published in December 2021 and distributed free of charge to patients and their families and to OA specialists at hospitals around Australia. “She’s too little to understand at the moment, but I’m pretty sure Lily will be proudly taking the book to her first show and tell at day care,” says Lynsey.
Medikidz is a global initiative set up by doctors to explain medical information to kids. In Medikidz books, superheroes are used to explain medical conditions, investigations, diagnoses, medicines and surgical procedures to young patients and their families – in a way that they can understand.
There are currently almost 200 children with OA-TOF who are being looked after at Sydney Children’s Hospital, Randwick. This number is higher at other hospitals around Australia, and even more so in the United States, China and India. The OA Kid’s Story will be made available online to benefit children and their families in Australia and around the world.
Project team members
The team is led by Dr Usha Krishnan, Director of OA-TOF Clinic at Sydney Children’s Hospital, Randwick (SCH), Senior Staff Specialist in Paediatric Gastroenterology and Senior Conjoint Lecturer at the School of Women’s and Children’s Health, UNSW. The team includes:
- Dr Vincent Varjavandi, Senior Staff Specialist in Paediatric Surgery (SCH), Conjoint Lecturer at the School of Women’s and Children’s Health, UNSW
- Mr Michael Purcell, Clinical Nurse Consultant - Paediatric Gastroenterology, OA-TOF Clinic Coordinator at (SCH)
- Medikidz, a global initiative set up by doctors to explain medical information to children.
- Jumo Health
- WesternEarth Moving