When Conor was diagnosed with myocarditis, we had never heard of it. We were so overwhelmed by this whole new world of medical and cardiac stuff and terminology. The shock and anxiety that comes with being told your child has a slim chance of survival also supersedes all else that you cant seem to think straight, never mind process what you are being told. We would have loved some documentation to be able to read about it, as opposed to Dr Google. 

To address the issue of lack of information, we worked with the Paediatric Cardiac Society of South Africa to develop a downloadable brochure that has been made available to paediatric cardiologists nationwide. This brochure provides doctors with a good general resource to give to parents and family members of infants with myocarditis as a source of credible information on the disease and what they can expect from treatment.