Statement by Mr and Mrs Ber – Inquest into the Sudden Death of their daughter Kasia – 30th November 2006
Mr and Mrs Ber attended the inquest into the death of their late daughter, Kasia, today. Their daughter died of Sudden Adult Cardiac Death Syndrome (SADS), often known as sudden cardiac death.
Mr and Mrs Ber are still numb with grief at the loss of their 17-year old daughter. That grief is particularly acute when, every day, they have to live with the fact that her death was avoidable.
The cause of her death was a hereditary heart condition, long QT syndrome. They said:
“To lose a child in any way is to suffer indescribable pain and grief. To lose our daughter in such sudden and tragic circumstances has only made it all the more difficult. We are particularly sad knowing that Kasia’s death could have been avoided, especially if there was more awareness of long QT syndrome, and other symptom-less heart conditions that kill many young people in the UK every week.”
“We would like to become involved with Cardiac Risk in the Young (CRY) to campaign for more screening to be made available for young people. We would also like to raise awareness of such conditions so that other parents do not have to suffer as we have, from something that is avoidable. We would also like to take this opportunity to thank all the family and friends that have supported us through this difficult time, and the team at CRY for their guidance.”
There are at least 8 deaths a week in the UK due to sudden young cardiac death. It is impossible to explain the depth of pain and devastation that these tragic deaths cause.
Kasia’s grandfather died of arrhythmia (unusual rhythm of the heart – relating to long QT syndrome). Her mother was diagnosed with long QT syndrome but the diagnosis was not followed up within her family, something which would have saved Kasia’s life. Kasia’s aunt also died of arrhythmia and following Kasia’s death, her aunt’s two children were diagnosed with long QT syndrome. The condition can be treated by the use of relatively inexpensive drugs, or if necessary surgery to implant an Implantable Cardioverter Defibrillator (ICD).
Unaware of the nature of her heart condition, Kasia had consulted her General Practitioner because she was having ‘funny turns’. The ECG that he carried out 11 days before she died showed that she had the hereditary heart condition but the diagnosis was not made and she was not treated. Since her death, the condition has been found in two of her cousins and as a result they can be treated with inexpensive beta-blocker drugs.
Mr and Mrs Ber are fully aware that nothing will ever bring Kasia back but they wish to do all that they can to ensure that other families do not have to lose a child in these circumstances.
CRY has provided Mr and Mrs Ber with valuable advice and support following Kasia’s death. CRY continues to campaign for greater awareness and knowledge of young sudden cardiac death, which could avoid the current unacceptable number of young people which die each week in the UK from such conditions.
Medical details of Kasia’s case
