Alison’s Column The impact of CRY’s Centre for Cardiac Pathology on grieving families I don’t think that anything has had a greater impact on reducing suffering for our bereaved families than when we set up our unique Centre for Cardiac Pathology (CRY CCP). Prior to this innovative development the length of CRY Founder time that a grieving family had to wait to find out what had killed their apparently fit and healthy child or partner could take anything from several weeks to 18+ months. This was because there were very few pathologists that understood young sudden cardiac death (YSCD) in the 1990s.
Alison Cox MBE
The genetic implications were only just beginning to be understood and the prevailing attitude often seemed to be that there was no rush, because the young person was dead and identifying the cause of death was just a matter of completing the required process. Because it was believed that these conditions were very rare and inexperienced pathologists did not recognise the dangerous abnormalities that were killing fit and healthy young people, there was little urgency, understanding or indeed interest in YSCD.
had happened and what had caused this so suddenly. We found ourselves asking how it could be that someone so seemingly ‘fit and healthy’ could possibly just die for no apparent reason – even our GP friends were unable to offer us any answers. “It took several weeks for the pathologist to come up with his findings. Eventually the official cause of death given was a myocardial infarction. At the time we knew this might serve as an official answer, although in reality it gave us no comfort, as in no way did it address the reason why this may have occurred. “In truth it made no sense to us but we felt powerless and lacking in energy to fight for more information. This is something that haunts us still today. We felt we had nowhere to turn for the help and advice we needed – it seemed as though the cause of death had been established for official purposes and we had no choice but to accept it with no consideration for our doubts or desire for elaboration. We had not yet heard of CRY.” Not having any guidance of what had happened to strike dead their apparently fit and healthy child or partner meant that families were not only traumatised, but also left dangerously in Limbo and at serious risk of another sudden death. CRY’s battle at that time was to raise awareness both of the danger of these potentially genetic conditions and the importance of expert pathology which identified whether or not further family testing was required. Pathology is only useful if it can be purposefully acted upon, but the additional anguish, after their tragedy, for a mother to learn that she could be the carrier of a genetic condition that had killed her child was often too much to bear. Consequently, she was sometimes unable to confront being screened herself, although she would usually support getting any other child/children screened. This was not only treacherous for her family but further inhibited progress, as did the fact that there was no dedicated facility that offered family screening.
One of our first supporters, Caroline Gard (above, second from right), explained: “When Andy (above, right) died 20 years ago, it was a complete shock as we had no warning or awareness that he might have had anything wrong with him at all, least of all a heart problem. In those very dark and dreadful early days after his death, when we were completely shell shocked, we had absolutely no idea what
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CRY’s first fundraising donation of £10,000 in 1995 was to St George’s for the down payment which secured the acquisition of an echocardiogram for the dedicated use of families at risk of the genetic condition cardiomyopathy – the main known cause at that time of YSCD. As a result the St George’s centre was the first to be able to offer screening for all family members together. When Howard English died in 1993, aged 32, playing rugby, his wife, Stephanie, was emphatically reassured that Howard’s death was due to a faulty mitral valve. The
Issue 76 | May to August 2018
