Hi.

My name is E! I have a son with CHD, F who is 8. He was born with TOF and had a full repair at 10 months old.

Last summer he started having problems on exercise and we discovered that his pulmonary valve, which had been leaky since his first op; had caused his right ventricle to become severely dilated. to cut a long story short, lots of tests later, and a trip to gosh to see if he was suitable for a new non-invasive procedure to repair the valve; he has been on the waiting list at glenfield hosp since may, for open heart surgery, the date has been changed once, then cancelled last week just as we were all packed and ready to leave for the hospital.

Up until last year he had always been an active little boy, no-one would have known that he had been born with CHD. It soon became apparent that he was struggling to keep up with his peers, and school became concerned about the responsibility of having him in school.

I am very interested in your campaign to raise awareness in schools, and feel that this would benefit Ed, if something similar could be introduced into his school. Out of 250 pupils, there is only him, and another younger boy who have a CHD ( that I am aware of). He is made to feel 'different', and I feel that I am too, being a 'heart child' parent. I feel very isolated sometimes, feel that other parents can't undersatnd what it is like! I'm sure that rings lots of bells with you too.

I read your posting on heartline, it is good to be able to communicate with others who DO know what it's like. Even though our children may have a variety of conditions, which range in severity and complexity; we all share the anxiety and fear for our children, and a desire to make their lives as happy and full as possible. Sorry for waffling on! Would love to hear more about your son. He has hyplastic left heart syndrome doesn't he? I don't know a lot about that condition, but do realise that it is a serious one. Looking forward to hearing from you, E. x