`It's a parent's nightmare to outlive one of their children, and acceptance of it simply goes beyond the normal capacity of the human mind." These are the words of an Irish father who lost his teenage son last year to sudden adult death syndrome (SADS). The perfectly healthy 19-year-old university student went to bed one night and was found dead the following morning. Post-mortem results returned no anatomical cause of death.
Four cases of sudden adult death syndrome are recorded every week in Britain. While the term "sudden adult death syndrome" is not usually used in pathology reports in the Republic, CRY (Cardiac Risk in the Young), the British support group for parents whose teenage children die of unknown causes, believes there must be an equivalent number of deaths here, with one in 500 young adults suffering from undetected heart conditions which may lead to death.
Meanwhile, the Central Statistics Office records sudden deaths as "sudden death, cause unknown" and at present, notes a very low incidence in this category (e.g. one death in 1995 in the 20-24 age group).
The term "sudden adult death syndrome" is still relatively new in Britain. Before its introduction, sudden deaths were often inaccurately attributed to other causes such as asthma, pneumonia or epilepsy, says the chief executive of CRY, Alison Cox.
An Irish mother who lost her son to SADS, says: "Every kind of pathology test - from epilepsy to toxicology to heart failure - was carried out but nothing was found. We even went for tests ourselves following our son's death, almost hoping to find some family medical problem but here again nothing was found.
"When you lose a child, something breaks within you which will never come together again. There is a terrible loneliness and grief when you know that you will never see your child again," she adds.
While in some cases of sudden adult death syndrome, a verdict of no known cause of death is returned, there are many others in which the pathologist discovers a previously undetected heart weakness.
CRY has compiled fact sheets on 11 heart conditions which were discovered as the cause of death at post-mortems. Hypertrophic cardiomyopathy (HCM) is the most common cause of sudden death in those under 30, according to CRY. It is a relatively uncommon and incurable heart disease in which the excessive thickening of the heart muscles (the myocardium) interrupts the vital electrical signals which keep the heart beating. While some patients never show any symptoms, others have shortness of breath, chest pains, palpitation and light-headedness. As these can also be the symptoms of other heart conditions, an electrocardiogram (ECG) is required to help identify the disease.
Other causes of SADS found after death include different forms of cardiomyopathy, in which the main pumping chambers of the heart are dilated and contract poorly. The tragedy here again is that the majority of patients die without having shown any symptoms. However, more recent research points to a genetic component which could be identified in families, leading to monitoring of the heart rate in susceptible individuals. Drug therapy is also a possibility once particular weaknesses have been confirmed.
According to CRY, sudden death can also occur as a complication after some viral illnesses (viral myocarditis, for example) combined with physical exertion. Another exercise-related cause of sudden death is deemed to be due to an undetected anomaly in the coronary arteries. According to CRY, this is the second commonest cause of death (after cardiomyopathy, mentioned earlier) in young athletes. Warning signs here include chest pains and blackouts during physical exercise.
Cox, who is both the founder and chief executive of CRY, started the support group because she was angry that there wasn't a public awareness of the number of fit and apparently healthy young people dying suddenly. "One in 500 people has one of the 11 conditions we have fact sheets on and if there was a screening programme, some of these deaths could be prevented," says Cox, who is also a bereavement counsellor.
She believes part of the problem lies with GPs who don't take seriously enough parents' - usually mother's - worries about one of their children. "Basically the symptoms are breathlessness, palpitations, dizziness and faintness. If a child has these and there was a sudden death in the family which was unaccounted for, this should set off the alarm bells. A family like this should be screened for heart problems.
"Cry's dream is that every child would have an ECG with their booster BCG at the age of 16 [Irish children have their BCG booster between the ages of 12 and 14] before they leave school. At this stage, they have done most of their growing and it is an appropriate time to evaluate a cardiac problem. An ECG won't cover everything but it will raise awareness that young people can have cardiac problems too."
While he is not against the idea of screening in principle, Dr Hugh McCann, cardiologist at the Mater Hospital, Dublin, does foresee certain complicating factors if such a screening programme were to be introduced. "First of all, for many of these heart conditions, there is no diagnostic test, and secondly, if you do suspect a problem, you have to ask a healthy young person to make lifestyle changes which may be unacceptable and even then, you may not be able to ensure that he is still not at risk," says Dr McCann.
While you can never compare one person's tragedy with another's, the lack of context and the absence of clues regarding why the person died adds an extra dimension to the grieving process for many bereaved parents. Speaking of the unrelenting grief that parents go though after the sudden death of one of their children, Cox says: "It is the crucifixion of a family. They will slowly bleed unless somebody helps them. Unlike other forms of death, there is nobody to place your anger on or to blame. You can't say something like `I'll make that corner of the road safer'."
The fact that you don't have any time to adjust to the idea that your child may die is an additional burden. "Often, mothers also convince themselves that they have let their child down and there is nothing to alleviate this pain except by putting her in touch with other mothers who have experienced it. Only then, will she realise that she is not alone in her grief," says Cox.
Cox adds: "People in Ireland who have lost a family member to SADS feel very lonely and neglected. They feel like they are the last people to get help and support. But we are in the process of setting up an Irish branch of CRY."
Cardiac Risk in the Young (CRY) can be contacted on tel: 0044-1372-276187
