Getting to the heart of a hidden killer

Thirteen months ago, Halina Reid knew nothing of the work of Cardiac Risk in the Young (CRY) – and didn’t think she would ever need to.

But sudden deaths from undetected heart conditions affect more young people than we realise and can happen at any time, in any place, as Halina discovered on September 28th 2009 – the day her world came crashing down. Her eldest son, Tom was just 19 when he suffered a cardiac arrest in a nightclub while celebrating his Fresher’s Week at University College London (UCL), where he had just enrolled as a linguistics student.

The former Garforth Community College pupil died from Sudden Arrhythmic Death Syndrome (SADS), caused by an undetected heart condition – and although such deaths are rare, statistics show that one in 300 people have an underlying heart defect. CRY estimates that around 12 young people a week suffer SADS-related deaths, with 80 per cent experiencing no prior symptoms.

Since losing Tom, Halina and Antony have devoted themselves to raising awareness of CRY and another charity SADS UK, and are trying to promote the measures which can be taken to prevent further tragedies.

The couple have already raised enough money to pay for 120 cardiac screenings at Galforth Community College, which would allow doctors to identify any undetected heart conditions and potentially save lives.

“These heart scans cost just £35,” said Antony, 44.

“It’s nothing really, but if a heart condition shows up, it can be treated.

“If everything comes back fine, it provides peace of mind. The only downside is you can’t just walk into a hospital and get one.

“CRY runs these health checks and they do various sessions in all the different parts of the country. Hopefully one day these scans will be more easily available because they really do save lives.”

Garforth Community College was hit by a double tragedy when pupil Lewis Barr, 15, died in his sleep in July. Although Lewis had been diagnosed with an irregular heart beat, it wasn’t regarded as a serious problem, with Lewis’s dad Mark later saying:

“For whatever reason he went to sleep and the next heartbeat just didn’t come.”

Across Leeds, there have been several reports of SADS, while nationally, probably the most famous case in recent years is Boyzone star Stephen Gateley, who was 33 when he died last October.

In most cases, individuals who suffer SADS-related deaths are perfectly fit and healthy, while many actually excel at sport – including Lewis, a keen cyclist whose dad represented Great Britain at the 1984 Olympics.

“When you’re doing exercise, you’re putting your heart under pressure,” said Dr Steven Cox, director of screening at CRY.

“So if there is an underlying heart condition, there will be associated risks, but sport itself does not cause cardiac arrests.

“Around 12 deaths a week are thought to be SADS-related. 80 per cent of people who die don’t have any symptoms and I think it’s difficult for people to comprehend that there could be a problem if there are no symptoms.

“One in 300 people aged 14 to 35 have a serious and potentially life-threatening heart condition. So in every school, one child will have a condition which they will benefit from knowing about, because it can be monitored and treated.

“The question is whether people want to know. Parents will probably say yes, but a 15 or 16-year-old wouldn’t even consider it.”

Another sportsman who suffered a SADS-related death is Gary Simpson, of Farnley, Leeds, who had just batted two sixes when he collapsed at a cricket match in May, at the age of 43.

Neither Tom nor Gary received heart scans but their lives could have been saved with an Automated External Defibrillator (AED).

The machine provides electrical therapy to allow the heart to re-establish an effective rhythm after a cardiac arrest – and in countries like America and Italy, the equipment is compulsory in public places. Halina and Antony are now campaigning for AEDs to be introduced at schools, sports stadiums and other public places, a potentially lifesaving measure which is supported by Gary’s daughter Charlotte, 21.

Since her dad’s death, Charlotte said she wants to encourage other young people to be more aware of their heart health and the steps which can be taken to identify any potential heart conditions, including the CRY scans.

“I’d fully agree with anything which might have saved my dad’s life on that day,” she said.

“I haven’t had a heart scan myself because I was diagnosed with a heart murmur as a baby, and the doctors do regular checks on my health.

“But I definitely agree with them, anything that can stop other deaths can only be a good thing. I have good days and bad days, but I’m back at university now and concentrating on that. It’s what my dad would have wanted.”

Antony, Halina and their other son Alex, 17, received heart scans after Tom’s death, but nothing was found by the doctors.

The couple think Tom’s collapse was due to an electrical fault in his heart, but they face the agony of never really knowing what happened – although they hope that in their lifetime, they might receive some answers.

In the meantime, they plan to raise more for cardiac screenings and are getting ready for the first round of 120, which will be held on February 2nd next year. They also worked hard during CRY awareness week, with Halina running information stands at Tesco in Garforth and Sainsbury’s in Colton, where she raised more than £600.

UCL have also been holding fundraising and awareness events in Tom’s memory.

“When you talk to young people, they think you’re going on at them and they just want to have fund,” said Halina.

“I can’t blame them for that, they’re young and they want to get on with their lives. They don’t think this will ever affect them.

“It’s parents that we really want to reach out to. Other people now have a chance which we never even knew we needed and if something comes out of it, if any young person can be saved, it will be worth it.”

Antony Reid will cycle from John O’Groats to Land’s End next May to raise funds and awareness for his AEDs in schools campaign.

Over the coming months, Antony will also be visiting schools and urging them to get involved in the fundraising. To help Antony, visit http://www.in-memory-of-tom.co.uk or email antonyreid2005@yahoo.co.uk

To make a donation, visit http://www.justgiving.com/thomasartonyreid

CARDIAC SCREENING FACTS

CRY’s cardiac screenings are open to anyone aged between 14 and 35. Each patient must sign a consent form and fill in a personal and family history questionnaire before the test.

The basic test is an electrocardiogram (ECG), which examines electrical activity within the heart. Small stickers and leads are placed at strategic points of the chest, arms and legs, which allow the electrical rhythm of the heart to be recorded and printed out.

The ECG is then reviewed by an expert doctor, who also looks at the personal and family history questionnaire.

Around five to 10 per cent of individuals require an additional test following the ECG, usually an electrocardiogram (ECHO). This is similar to the ultrasound for pregnant women and measures the dimensions of the heart, as well as blood flow.

Around two per cent of individuals are referred for further tests after the ECG and ECHO.

Both the ECG and the ECHO are painless, non-invasive procedures.

CRY holds both public and private screening sessions. To see a list of dates and locations of upcoming screenings, visit https://www.c-r-y.org.uk/ecg.htm

To organise a private screening, call the CRY screening administrator on 01737 363 222.

For more information on CRY or to watch a short film of David Walliams being tested, visit https://www.c-r-y.org.uk