Congenital heart disease is not a specific ailment, but rather a general name given
to cover a variety of heart defects present at birth, approximately 1 in 145 babies
are born with a heart defect and whilst some may correct themselves, others need
dangerous heart surgery meaning that parents and sometimes children have to witness
sights like the ones depicted below.
This is not a medical site so cannot give details of the various types of CHD, diagnosis,
treatment etc. But as a self help site it is our goal to provide the necessary resources
to help parents, family and friends understand the condition and the range of emotions
which may occur after a diagnosis of CHD, and this unfortunately includes our book
list on terminal illness and bereavement as not all cases of CHD have a happy ending.
On the right we have included links to other sites which provide an insight into
what congenital heart disease is, its diagnosis and possible treatment.
Little Ross, “my precious little boy born with an uncertain future, his brothers
and young friends have been the inspiration behind the mission that we hope will
turn into a reality to help many other families encountering any kind of emotional
roller coaster.” - Donna Nevill
There are many things that you cannot prepare for in life and seeing your child like
this no matter how many pictures or explanations you have received is one of them.
However, any tools that can help explain will aid the process of supporting families,
friends and siblings through this experience as sadly there is a combination of outcomes
and no real certainty when your child is diagnosed with a non-correctable heart condition.