Below are some sites that may be of interest.
There are many sites on the web dealing with congenital heart defects. It can be helpful to research things on the Internet and use this information in conjunction with qualified advice. Remember that information gathered on the web should not be used instead of medical advice.
Crumlin Hospital based children’s support website
Our Lady’s Hospital for Sick Children, Crumlin
Teenagers and young adults
UK site, very good information and facts
Marfan Syndrome Support Group Ireland
Heart transplant families