A Couple
whose
12-year-old son died after a heart attack fear his brother may have a
similar condition
Rachel
and Peter Edwards have an agonising wait until they know for sure if
five-year-old Philip is at risk.
If
he has a similar heart defect to the one that claimed his brother’s life
it may not show up in tests until his heart is fully developed.
 In
the meantime, Philip is undergoing regular check-ups after collapsing and
suffering blackouts.
His
parents, who live just outside Cheltenham, fear he may be suffering from a
strain of cardiomyopathy but the condition may not be detectable until he
is around 13.
Mrs
Edwards, who also has a daughter Victoria, two, said: Philip had shown no
signs of being ill until he collapsed during a trip to Sudeley Castle.
“One
minute he was running around and the next minute he was lying prone on the
ground,” she said.
“He
went a ghastly white colour. He
was like that for 23 seconds although it felt longer.
It felt like history was repeating itself.”
In
1997 the couple were watching eldest son Alexander play cricket for
Cheltenham College Junior School when he suffered a heart attack and later
died.
“One
second Alexander was running across the field and the next he had dropped
like a stone,” said Mrs Edwards.
“When
it happened to Philip it brought back all the memories.”
In
the most serious incident Philip collapsed and briefly lost consciousness.
Mrs
Edwards said: “He has undergone tests but cardiomyopathy doesn’t
normally show until the patient is in their teens.”
Philip’s
grandmother Violet was only 52 when she died of hypertrophic
cardiomyopathy which can be hereditary.
Mrs
Edwards said: “It’s extremely rare to get two different strains of
cardiomyopathy in the same family but clearly it raises Philip’s risk.
“With
Philip it will be a waiting game to see if any complications arise.”
Philip
has to undergo twice yearly echo cardiograms which are like ultrasounds
and tests called ECGs which monitor the heart beat.
Mrs
Edwards said: “The problem is difficult to detect until the heart has
developed.”
In
Alexander’s case the condition was caused by a flu-type virus which
weakened his heart muscles.
He
had the virus 16 months before he died and would have needed a transplant
if the problem had been diagnosed.
Mrs
Edwards said: “You never get over something like that.
It’s as if you stay in a permanent trance.
“He
would be 18 now and the anniversaries are still there.”
Mrs
Edwards said her children’s cases highlight the importance of a
heart-screening service within schools.
The
family believe an ECG – which can detect irregularities in the heart
beat – could save up to 400 seemingly fit and healthy youngsters dying
of undiagnosed heart conditions.
The
couple work on behalf of the charity Cardiac Risk in Young People and have
already approached the region’s MPs to ask them to support their call
for national screening.
The
ECG tests are carried out by a team of experts and take between five and
eight minutes.
The
result is sent to a cardiologist who assesses them and returns them to the
school within three weeks.
The
best time to test is around puberty, when children are 13 or 14.
Three
tests can be carried out at a time and 200 pupils could be tested in just
one day. The total cost for
this would be £7,000.
Mrs
Edwards said: “People might say £7,000 is a lot of money but I know
from personal experience its nothing compared with the value of a
child’s life.
“Some
schools in the country use a mobile unit to carry out these tests but the
best of my knowledge none in Cheltenham do.
“If
Alexander had had a test then he would probably be here now.”
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