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 A
few weeks later I was called to accompany Rhys to Bristol as the paediatric
cardiologist wanted to compare our ECGs. We both had a prolonged QT interval
and a few weeks later LQT1 was confirmed by genetic testing.
Rhys had no history of fainting, but I had a history
of collapses when a child - but this was always put down to ‘being a kid’ and I
was approaching 20 years of military service including operational tours without
any ill effects.
Rhys’ elder sister Sian, was confirmed clear but Jan
and I then had to prepare ourselves that our 2 year old daughter Rhiann may also
have the condition.
Following tests and more tests she was also
confirmed with LQT1 and immediately placed on beta blockers which she takes to
this day. Rhys was deemed of sufficient risk to warrant the implantation of an
ICD a year later and he had to give up his beloved karate as a result.
Our initial attempts to find out more information on
the condition involved hours of trawling through the internet. The condition
was unknown to our local GP and military doctors.
We now knew the condition existed but had to take
the lead ourselves - with Jan spending more hours on the internet and me tracing
back the family tree through my parents, their brothers and sisters and
explaining to them the gravity of the situation.
They were met with lukewarm responses from their
local GPs who seemed very reluctant to follow this up. By this time we had
discovered the CRY website and had contacted them for support. Armed with many
leaflets I charged over to Wales and discussed the situation with the family GP
who by now had become more receptive. 4 years later we are still battling to
get them tested - some of this is down to themselves but I always point them in
the direction of the CRY website and to read up for the danger signs.
In 2006 another ray of light came into the world,
our daughter Nelly. She too has also been confirmed with LQT1. We are trying
to give the girls - now aged 5 and 2 - as normal a life as possible. Rhys is
now at university, also leading a normal ‘student’ life. They all have their
special heart medicine every evening and get a day off school to go up to London
for the annual check-up as well as regular reviews with the local Primary Care
Trust. We were successful in getting a portable defib from our local Primary
Care Trust. Rhiann takes this to school with her and Nelly’s childminder is
also local to the school and, along with the school staff, has undergone
training on its use.
We realise so far we have been lucky and that we are
in an ongoing situation. We have learned so much from our experiences and
continue to learn. Being a representative for CRY gives us both the opportunity
to raise awareness of this silent killer and share our experiences with others
who may have just discovered its in their family, and we would like to support
others and CRY in any way we can.
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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