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 Since his
death I have spent a lot of time researching the condition and the possible
treatments. CRY put me in touch with a number of experts who have helped answer
my questions.
Our greatest concern was that Long QT is a genetic
condition and it may be passed onto any other offspring we have. We wanted to
start a family again but did not want to put ourselves through the heartache of
losing another child.
Genetic testing on my husband and I showed that
neither of us carried the mutation, so the chances were it was a one-off. We
have since had another child who has been tested and shows no sign of Long QT.
A simple ECG performed from 3
weeks old is able to identify Long QT as well as other ‘dormant’ heart
conditions and could prevent up to 20% of ‘cot deaths’ as well as preventing
cases of SADS. So much can be done to prevent other people going through the
indescribable grief of losing a child and I want to help.
If you would like to contact one of our
Representatives or a Bereavement Supporter please call the CRY office at 01737 363222 or e-mail cry@c-r-y.org.uk
and we will put you in touch with someone who may be able to help
you.
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