A story book for children with Oesophageal Atresia that answers the question “why am I different?”
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 no books to assist parents in explaining the condition to their child or to the extended family.
Director of OA-TOF Clinic at Sydney Children’s Hospital, Randwick (SCH), Dr Usha Krishan, realised this gap and with the help of Jumo Health, and one of the Foundation’s long-term supporters, Western Earthmoving, ‘The OA Kid’s Story: A Story Book Explaining Oesophageal Atresia for Children’ was developed.
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 comic-book also stars two of Dr Krishan’s patients, 11-year-old Hassan and 16-month-old Lily as main characters.
The OA Kid’s Story e-book is now available online and a limited number of printed copies will be distributed to paediatric hospitals/OA clinics across Australia.
The e-book has been welcomed by the EA community and received national and international endorsements from:
- The International Network of Esophageal Atresia
- The European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN)
- The Australian Society of Paediatric Gastroenterology Hepatology and Nutrition (AuSPGHAN)
- Various European and Australian EA parent support groups