'I knew I had lost my son'

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By Jane Elliott Health reporter, BBC News

Chris Haw was 25 when he died

There were no indications that Chris Haw was at risk from a heart problem until he collapsed and died, aged 25.

Firefighter Stephen Haw had arranged to meet his son for lunch, but got to the store where Chris worked to find him collapsed on the floor.

"I tried to resuscitate him, ventilated him and performed CPR (cardio-pulmonary resuscitation) on him until the arrival of the paramedics, but by then I knew I had lost my son, best friend and love of my life," Stephen said.

Undiagnosed

A post-mortem examination revealed no reason for the previously healthy and sporty young man's death, but subsequent tests on his family revealed Stephen had a genetic heart condition and it was assumed this had also caused Chris's death.

We will never get over losing Chris Stephen Haw

Every week 12 apparently fit and healthy young people die in the UK from undiagnosed heart conditions.

Now two new national services have been launched which aim to improve diagnoses and alert other family members to the dangers they face.

The Cry (Cardiac Risk in the Young) Philips Test My Heart Tour 09 aims to reduce the number of heart deaths of apparently fit and healthy young people.

Medics will carry out heart tests on 3,000 14 to 35-year-olds chosen at random throughout the country to look for abnormalities and identify conditions which could potentially prove fatal if left untreated.

At the same time the British Heart Foundation (BHF) has launched its genetic information service (GIS) to try to educate families of their risks.

Urgent referral

Families with a sudden unexplained death will be referred by their coroner to the GIS although any family with an inherited heart condition can also use the service.

Experts say this is vital as many families are not referred after a sudden death in the family from an inherited heart condition - leaving other relatives at potential risk of premature death or ill health.

The GIS also aims to improve access to clinics for inherited heart conditions for those who need it.

The foundation will send the caller a letter for his or her GP which supports the need for an urgent referral to a local clinic for inherited heart conditions.

It will also provide emotional support by telephone from a bereavement counsellor and cardiac nurses.

Cry aims to test over 3,000 young people's hearts

BHF medical director Professor Peter Weissberg said:"An inherited heart condition can have a devastating affect on a family.

"Tragically it is often only diagnosed following the unexpected sudden death of a young person.

"The family have to cope with the loss of a loved one while undergoing assessment to determine if other family members have the same condition.

"The GIS aims to improve access to specialist clinics which can help save lives."

Vital service

Professor Roger Boyle, the government's national director for heart disease and stroke agreed that better help was needed.

"This helpline will provide much needed emotional support to those who have sadly lost a family member to sudden cardiac death.

CARDIAC RISK Twelve apparently fit and healthy young people die from undiagnosed heart conditionseach week in the UK About one in every 20 cases of sudden death from an inherited heart condition is due to Sudden Arrhythmic Death Syndrome (Sads) Sads is where no definite cause of death can be found even after the heart has been examined by an expert pathologist

Stephen Haw said better information was vital because, before his son's death in 2006, the family had had no idea they were at risk from heart problems.

"Chris was very sporty and trained every night for one sport or the other," he said.

"Tests later showed that I have heart problems, probably Brugada syndrome (severe disturbances of the rhythm of the heart), although they cannot be sure.

"They have said my condition is a very mild form, but have warned me that if I get an dizziness, blackouts etc I have to go to hospital.

"The rest of the family were given the all-clear.

"We will never get over losing Chris and I want to tell people all over the country about Sads (Sudden Arrhythmic Death Syndrome) and how assessment by experts can pick up an inherited heart condition and help save a young person's life.

"I wish I could take Chris's place, I really do."

The GIS is available on 0300 456 8383 and it is open from 9am to 6pm Monday to Friday.