OUR SON LIVES WITH SUDDEN ADULT DEATH SYNDROME
Lewis had to stop competing in road runs when he felt dizzy and sick / posed by models
LEWIS Cox is fit and well despite being diagnosed with a heart condition that could kill him at any time, as it did Stephen Gately, says HELEN TURNER
Sandie Cox was distraught when told a heart defect could cause her son Lewis to have a cardiac arrest at any minute. Yet despite the fact physical exercise can trigger the condition, Lewis, 16, is fighting fit and even winning Welsh road-running races.
In 2007 Lewis started choking on his food. Sandie, 43, a playgroup assistant and her husband Eddie, 53, an events assistant, suspected their son had an allergy to carbohydrates, as rice and bread were the worst culprits.
Lewis recovered but when the problem returned a year later, Sandie took him to the doctor.
Last October, he was put under general anaesthetic at Glan Clwyd Hospital, Bodelwyddan, north Wales so a surgeon could examine his throat. It was discovered his oesophagus was too narrow so it was widened.
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He has the same condition that killed Boyzone's Stephen Gatley (far right)
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More horrifying however, was the news that the electrocardiogram (ECG) reading his heart had identified an abnormality in his heart rate.
“I was shocked,” explains Sandie. “Lewis had always been so fit and healthy.”
The reading was sent to a cardiologistat Alder Hey Children’s Hospital, Liverpool, who diagnosed Lewis with Wolff-Parkinson-White syndrome (WPW) – a heart condition which if fatal would have been considered sudden arrhythmic death syndrome, otherwise known as sudden adult death syndrome or SADS.
“I felt terrified for my son,” she says. “I hated the idea it could lie dormant for years.”
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I won’t relax until he has the operation to cure him but I’ve also realised the diagnosis was a blessing in disguise.
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The family waited anxiously until December 2008 when they went back to Alder Hey to see a cardiologist. He explained that Lewis has an extra electrical pathway which can occasionally make the heart beat abnormally fast. In rare circumstances this can lead to cardiac arrest and sudden death.
The cardiologist added it was imperative to know the symptoms associated with the triggering of WPW: chest pain, dizziness or fainting and abnormal shortness of breath during exercise. Lewis was told he would need further tests in the new year but in the meantime he could carry on as normal. Sandie, who also has a 10-year-old daughter Tryphena, asked if there was a cure.
She was told the extra pathway could be burned, which is a treatment called ablation, or frozen, which is called cryoblation, but these are risky procedures and doctors decided Lewis should be monitored first.
In January Lewis returned to Alder Hey where he was given a series of running tests. His heart rate was recorded on an ECG before, during and after exercise.
“Lewis was incredibly brave that day,” says Sandie.
For a fortnight Lewis continued to record his own heart readings up to three times a day between exercise before sending them to the hospital. Finally he was given the go-ahead to carry on road running and in February this year he ran the 10k Nick Beer Race in Llandudno. Nevertheless, a month later he felt sick and dizzy while taking part in a cross country race.
“Knowing the symptoms, he stopped immediately,” says Sandie. “It was another wake-up call.”
Sandie decided the best thing would be to try to cure Lewis. However when he went for surgery in June, the attempt to burn the pathway was aborted when surgeons discovered its position made it too dangerous.
In the meantime, Lewis has had check-ups and satisfied the doctors he can continue competing. Just a month after the abandoned operation he came first in the under-18s Great Orme Challenge. He also achieved 11 GCSEs.
“I’m proud of Lewis,” says Sandie. “I won’t relax until he has the operation to cure him but I’ve also realised the diagnosis was a blessing in disguise. Lewis has proved you can live with this condition.”
● From January 2010, the charity Cardiac Risk in the Young (CRY) will
screen all 14-year-olds in the South-east for undetected heart
conditions at St George’s Healthcare Trust, south London. It is hoped
to then go nationwide. Visit www.c-r-y.org.uk
WHAT IS SUDDEN DEATH SYNDROME?
● Sudden adult death syndrome is otherwise known as sudden arrhythmic death syndrome or SADS.
● It can affect people of all ages. It can be caused by an abnormality of the heart structure or of the electrical system of the heart. These conditions can cause an abnormality in the heart rhythm. Changes to the heart’s rhythm can cause cardiac arrest and possibly death.
● An abnormality of the heart structure is the main cause of sudden death in people under the age of 35.
● It is difficult to know how many people are living with cardiac conditions as many may not be identified while alive.
● For more information, contact SADS UK by visiting, www.sadsuk.org, e-mailing info@sadsuk.org or calling 01277 811215.
