Seven-year-old Hannah Turberville and her family had just enjoyed a fantastic skiing holiday in the French Alps. On their last night, Hannah, her twin Lucy, brother Oliver, eight, and parents Katy and Chris went out for a meal of pizza and ice-cream. The children then went to bed early, ready for the long drive home.
Before switching of her light at 11.30pm, Katy, 39, heard a sound from the children’s room and went to investigate.
‘I heard a strange cough,’ she says. ‘Hannah had eaten so much she’d been sick after leaving the restaurant, so I though she’d been ill again – but there was nothing on the pillow.
‘I lifted her head and realised with horror that she wasn’t breathing. All she did was make a gaspy, sighing sort of noise.’
Katy, a marketing executive, shouted for her husband, Chris, and they lifted Hannah onto the floor. ‘We assumed she was choking on vomit, so we tried to clear her airway by doing the Heimlich Manoeuvre.
‘I then began giving her heart massage and mouth-to-mouth. I’d been a first aider at work, so I’d picked up these skills. We weren’t panicking but we knew we were in a serious situation. Nothing we did made a difference.’
It took the paramedics half an hour to reach the family. By then, Chris, 40, a marine underwriter, and Katy had taken Hannah out onto the balcony, where they continued to try to resuscitate her.
‘We had hoped the cold might help her last longer, until help arrived. Luckily the two other children were still asleep.
‘The paramedics tried to restart Hannah’s heart with a defibrillator and they also administered drugs. But there was no sign of life. We were totally numb and in shock at what had happened. It’s still hard to put into words how Chris and I were feeling,’ says Katy, a year later.
In the morning, the couple had to break the awful news to Lucy and Oliver that Hannah had died. ‘It was so painful – we didn’t quite know how to start.’
Two days after Hannah’s death, the family flew back home to Harpenden, Hertfordshire.
‘Before we left, we gave statements to the local police because there was no obvious reason for our daughter’s death,’ says Katy. ‘We also went to see the doctor in the resort and he had to go through the formalities of filling out a death certificate. He wrote something like ‘Death due to a cardiac episode’.
The family’s grief was compounded by the fact that Hannah’s death was totally inexplicable. ‘Hannah was an active, healthy child who loved playing football and had just enjoyed her fourth skiing holiday.’
A week later, Hannah’s body was flown back to England, where a pathologist discovered that she had died of a heart abnormality called an arrhythmia. This is when an electrical imbalance in the heart disturbs its normal rhythm.
As a result, the heart cannot pump blood to the brain or other organs properly, which can be fatal. It is common – as in Hannah’s case – for this to happen without warning.
Every week, according to official figures, eight apparently healthy young people die of sudden cardiac death caused by a genetic abnormality in their heart.
The charity Cardiac Risk in the Young (CRY) believes that the death rate may be even higher – perhaps 12 a week, or more than 600 young people a year – as many cases are put down to other causes. Arrhythmia is one of several conditions linked to sudden cardiac death. Another, more common cause is hypertrophic cardiomyopathy, caused by the thickening of the heart muscle.
‘Around 130,000 people under 35 in the UK have these inherited heat conditions,’ says consultant cardiologist Dr Sanjay Sharma of London’s King’s College Hospital – ‘but the vast majority never know it.’
‘For most, it won’t prove fatal; but for some, even taking exercise could cause an attack. Although exercise is known to keep the heart healthy, it can be fatal for people with these serious defects.’
In half the cases of sudden cardiac death, there are no warnings and no obvious symptoms. Unllike with a heart attack, there’s very little chance of saving a young victim, and many die within a few minutes.
In the past, discovering the true cause of death could take months, if it was picked up at all.
Alison Cox, chief executive and founder of CRY, explains: ‘In the majority of instances, unless the pathologist carrying out the post mortem has an expertise in dealing with sudden cardiac death in young people, it would most likely be recorded as death due to natural causes, or “unascertained”.
Not only can this exacerbate the misery of the grieving family, but it could mean that other relations who might be affected by the same condition would not be screened for it.
To address this, on Friday, CRY is opening a fast-track cardiac pathology lab at London’s Royal Brompton Hospital. The new lab, which was established with a grant of £180,000 from the charity three years ago, has completed a successful pilot study and will now be able to take referrals from coroners across the country.
This means families will be able to learn in two weeks why their child or partner has died.
‘A fast-tracked, clear answer is not just to comfort the grieving family,’ says Alison Cox. ‘It could also save the life of another family member. If it’s discovered that the death was caused by a genetic heart defect, then screening the family should become a priority.’
The new unit is headed by Dr Mary Sheppard, a cardiac pathologist. ‘We’re building up a database of expertise here so we can more accurately tell why someone has died,’ she says.
‘For a family, having answers so quickly is priceless because of the anxiety and stress they are under. What we can find out here can also lead to them being screened if necessary, which will hopefully mean fewer tragic cases for me to analyse.’
It was Dr Sheppard who carried out the post mortem on Hannah. The speed of the results made a huge difference to the Turberville’s.
‘It would have eaten away at us for ever if we had not had the rapid and accurate analysis of Hannah’s heart,’ says Chris.
Katy adds: ‘Dr Sheppard even rang us straight after the post mortem to tell us her findings. It was a fantastic service which really helped us at such a difficult time.
‘We needed to know why this had happened and if we could have done anything to prevent it – which we were told we couldn’t.’
The early results also meant Hannah’s brother and twin sister could be extensively screened. ‘Thankfully, there were no signs of heart abnormalities in either of them’, says Chris.
CRY has been campaigning since 1995 for young people to be screened for heart defects. There is no government-funded scheme for such screening, but CRY expects to carry out 10,000 cardiac testing programmes on young adults this year.
A GP would refer patients for screening only if a family member had died suddenly, or where a patient had a potential heart defect needing further investigation. But even without a referral, those aged between 14 and 35 can pay £35 to be screened at one of CRY’s subsidised clinics.
According to Alison Cox, ‘excessive tiredness, shortness of breath, light-headedness and palpitations can be put down to a young person’s lifestyle of not enough sleep, late nights and such, like, but can later turn out to have been an indicator of a cardiac problem.
‘The really critical factor that should always raise alarm bells is if there has already been an unaccountable sudden death of a young family member. If so, the rest of the family should be checked.’
The 20-minute screening consists of a health survey, examination and electrocardiogram (ECG), which looks at the electrical conduction pathways around the heart. If further investigation is required, an echocardiogram (a detailed ultrasound scan of the heart) is performed.
If there is a problem, there are several treatment options, including lifestyle changes, drugs such as beta blockers of implanting a heart defibrillator.
Since Hannah’s death, the Turbervilles have been helping to raise funds for CRY in the hope that research will reveal more about sudden death in young people.
Chris says: “There should be an NHS screening programme for all children and it shouldn’t have to be driven by parents. However, as this doesn’t yet exist, I do feel parents should consider having their children screened.’
