Every week 12 active young people die from undiagnosed heart defects. Adrian Lee talks to one family supporting a campaign for routine screening.
Daniel Young had just scored for his football team when he collapsed on the pitch. Doctors later told his family that, due to an undiagnosed heart condition, the super-fit 16-year-old was probably dead before he hit the ground.
Every week 12 apparently fit and healthy young people like Daniel die in the UK from undiagnosed heart defects.
The charity Cardiac Risk in the Young (CRY) is campaigning for active children t be screened. It says many lives could be saved by simple scans. Eventually CRY wants all teens to have routine heart scans while still at school.
“We had no idea anything was wrong with Daniel,” says his mother Dionne, 45, from Atherton, Lancashire.
“He lived for football. When he wasn’t playing or training, he would watch it. He’d just started college and wanted to be a PE teacher.”
Dionne and her husband Craig, 40, were on their way home from a family christening when they received a call to tell them their son had collapsed.
“We had only to look at the doctors’ faces to realise this was our worst nightmare.
After scoring he was jogging back for the kick-off when he collapsed. One of the fathers there tried to resuscitate but we were told that nothing could have saved him.”
A coroner discovered Daniel had an enlarged heart and could have died at any time. Pressure on the organ caused by exertion was fatal.
“We know that it could have been treated with medication,” adds Dionne, who is backing the screening campaign. “That’s what makes it so hard to take.”
After their son’s death in 2005 Daniel’s parents raised funds for his team-mates to have scans. Dr Steven Cox, director of screening for CRY says there is a group of more than 10 heart conditions that commonly go undiagnosed.
They divide into two categories: the first are caused by structural heart defects, as in Daniel’s case; the second happen when the heart’s electrical current misfires. “Screening could reduce these deaths by about 80 per cent.”
In other countries, such as Italy, all young people playing organised sport are scanned. It’s already happening in some sports in the UK but coverage is patchy and normally only at elite level.
“Screening young people who do organised sport is a good start though anyone with one of these conditions can be just as much at risk running for the bus,” says Dr Cox. A scan costs from £35. CRY organises its own screening events, detecting an undiagnosed heart condition in about one in 300 tests. The CRY Philips Test My Heart Tour aims to examine more than 3,000 people aged between 14 and 35.
Another way of cutting deaths is to raise awareness among relatives of victims that many of these conditions can be inherited. After Daniel’s death his parents and his sister, Hannah, now eight, were screened and found to have healthy hearts.
The British Heart Foundation has just launched its Genetic Information Service (GIS), a free helpline for relatives who have lost a family members to an inherited heart condition. It will ensure that anyone at risk is directed to a specialist. TV host Gabby Logan, who lost her brother Daniel to an inherited heart condition when he was 15, is supporting the launch.
“Tragically an inherited heart condition is often only diagnosed following the death of a young person,” says Professor Peter Weissberg, medical director at the BHF. “Relatives are not always made aware that they may be at risk.”
The GIS aims to improve access to specialist clinics which can help save lives.
Cardiac Risk in the young: c-r-y.org.uk
To book a free check at one of the tour locations see testmyheart.org
Genetic Information Service: 0300 456 8383
