In September 2011, Deborah Dixon experienced every parent’s worst nightmare. Her son Aaron died in his sleep two weeks before his 24th birthday. The cause of death was eventually diagnosed as Arrhythmogenic right ventricular cardiomyopathy (ARVC), a genetic heart defect. Having previously been admitted to hospital twice after blacking out, doctors put it down to dehydration. Aaron was never given an electrocardiogram (ECG) as this is not a common medical procedure for people aged under 35.
Deborah was directed to UK charity Cardiac Risk in the Young (CRY) which helps to prevent sudden cardiac deaths through awareness, screening and research. Eventually, she set up a memorial fund in Aaron’s name within CRY and is now a tireless campaigner and fundraiser to enable screenings to take place throughout the year. She has also written a raw account of losing her son.
“I just wanted to be totally honest about how I felt when it happened,” says Deborah. “Losing Aaron has been a nightmare that devastated the family. One of the reasons I wrote about it was so it went onto the CRY website where parents can read and share their stories.
“Life goes on, but time doesn’t heal. It’s like having a gaping wound. People said to me I’d be a lot better with time, but that’s not true. Sometimes it gets worse. I know parents in the same position who don’t even leave the house. I also found it difficult going out and seeing people immediately afterwards, but I’ve also got a daughter and you must be strong for your other children. Everyone deals with grief in their own way, but the loss of a child is completely different to losing a parent, husband or wife. What made it even worse was that it was two months after Aaron’s death before we even knew what caused it.”
Following the death of a child, many people would just pull the duvet over their head and shut out the rest of the world. But Deborah threw her energies into trying to prevent other parents from going through what her family endured. “The coroner directed me to the CRY charity. I didn’t contact them for about 18 months but did look at the website and was shocked to read that at least 12 young people were losing their lives each week to undiagnosed heart defects, 80 per cent having had no prior symptoms whatsoever.
“When I realised that the NHS doesn’t give ECG screening to the young, and how desperately needed it was, I made the decision to set up a memorial fund for Aaron.”
With so many important causes trying to raise funds at the same time, the help and support Deborah has received from CRY has been vital.
“CRY carry out the screening for me at a subsidised rate, so I pay £5,000 a day for them to screen 100 people which works out at £50 per person. There’s a lot of people who can’t afford that which is why I decided that I would raise the money to enable screening to be open to everyone”
Deborah gave up her job in order to work full-time raising money for the screening programme. It’s clear that the time involved is offset by her awareness of the importance of her efforts. Is she a woman on a mission?
“I am, actually.” She laughs. “I wanted to reach as many young people as I could. I’m lucky that I don’t have to work, and I’d rather do this. Raising the money is the most difficult, time-consuming part as it is a constant effort. Aaron’s friends have been amazing doing the London Marathon, skydives, tough mudders and the like.
“I’m also constantly applying for grants which takes up a lot of time. I’m one of the chosen charities for JD Sports. Their foundation supports ten smaller charities and I was lucky enough to be chosen.”
All money raised goes into Aaron’s Memorial Fund to pay for screenings. There are 11 screening days to fund this year alone, but the statistics highlight how vital everyone’s efforts have been. “I’ve held 34 screening days so far which amounts to 3,454 young adults,” Deborah says. “115 of those people were referred with abnormalities that otherwise would have gone unchecked.”
With such compelling evidence, does Deborah believe that the medical profession’s views on heart screening for the under 35s is changing?
“I’d like to think so, but I still hear some frightening stories. When a young person passes out and is admitted to hospital, staff look at them and assume they’re fit and healthy because of their age. Aaron was admitted twice and put on a drip and, because he was OK afterwards, they told us he was just dehydrated. You go along with what the doctors tell you. How could you ever imagine there was any reason to ask them to do an ECG? Only Italy has a national screening programme at the moment. It’s difficult here because our NHS is obviously struggling and doesn’t need more to contend with.”
With Sport Relief events raising money for worthy causes, it’s perhaps ironic that Deborah also funds screening for elite athletes. It’s a surprise to learn that even this group of young people are not automatically checked.
“I’ve funded screening for over 600 athletes and I often get people asking me why I’m paying for it,” she says. “It’s important they are screened and so I made the decision to continue funding it leading up to the Olympic Games. Sports clubs are also constantly getting in touch now, clearly more aware of the risks to young, seemingly healthy people.”
It’s not just the medical profession who don’t suspect potential heart issues in the under 35s. It also couldn’t be further from the minds of young people themselves. “We all think we’re invincible when we’re young and that heart issues happen to older people, smokers or the overweight, but that couldn’t be further from the truth. Aaron was fine, fit and healthy. As a parent, spending 15 minutes of your child’s life to get them screened gives peace of mind. Word certainly seems to be getting about as the 100 spots available at public screenings often get subscribed within an hour now.”
Another benefit of getting your child checked is that the simple, thorough 15-minute process also prepares for any possible outcome.
“Having it done though CRY rather than going to your GP surgery is better,” advises Deborah. “Doctors know a little about a lot of things but are rarely specialists in heart defects. CRY screenings are done by cardiologists who know what they’re looking for. They discuss the results and, if they’re not happy with them, I pay for the patient to have a cardiogram ultrasound of the heart there and then so there’s no waiting. A consultant will then decide whether to refer or not, so you leave fully informed rather than go through the long process of waiting for an appointment.”
Enabling something positive to come out of such a devastating loss is an admirable achievement, but Deborah admits that the work takes its toll.
“It is hard once a weekend of screenings is over. I go home and don’t speak to anyone for a couple of days. There are many rewarding stories that come from the work, however. One young girl just turned up on the day without an appointment because she hadn’t felt too well. I managed to fit her in and thank God I did.
“It turned out that she had a heart defect and a 20 per cent chance of survival. A year ago, she had a heart transplant and has just celebrated the anniversary with a charity ball to raise more funds for us.”
Images courtesy of CRY
This article was written before the Coronavirus outbreak. All details correct at time of writing.
Twitter @CRY_UK
