As told by her mother, Doreen Harley
(Copyright Doreen Harley)
26 August 1998
My husband Terry, surviving daughter Rachel, and I have returned from the inquest hearing following the death of my eldest daughter, Lisa Jane Browne, who died on 10 January 1998, aged 27 years. We have been given an “Open” verdict with the cause of death “Unascertainable”. The pathologist, Dr MacKay, said it was possible that Lisa suffered from an electrical abnormality in her heart, but these things cannot be detected after death. No obvious cause of death was found at post-mortem and the family were told that Lisa should still be alive. The pathologist said he was aware that research was going on into these “sudden deaths”, but he had no idea where the research was at. We were given no information either by the coroner or the pathologist as to “sudden young cardiac deaths” and we were certainly not told that the surviving family members should be screened.
27 August 1998
The local newspapers carry the headline “Nurse Dies from Adult Cot Death”. Our emotions are all over the place. Is there some link to Adult Cot Death and Sudden Infant Cot Death? Why has our dearly loved daughter died and no one can tell us WHY? Where do we go from here? We are having counselling to try and help us to come terms with our loss. Every parent’s worst nightmare is to lose a child. The pain is dreadful; will it ever get any better? Most of all we need to know why Lisa died.
4 September 1998
Someone has anonymously sent us (via the newspaper) an article about another family who have suffered a loss similar to ourselves. The article mentions the charity Cardiac Risk in the Young (CRY) and the work of Professor William McKenna and his team at a London hospital. I immediately telephoned Alison Cox at CRY; she was very understanding and sent us an information package about Sudden Cardiac Death in the Young (under 35). It wasn’t hard to get an address for Professor McKenna in London (he is also a Patron of CRY) and I wrote to him explaining the circumstances around Lisa’s death and asked him if he could help us.
18 September 1998
Professor McKenna wrote back to us saying that if we got a GP referral he would be more than happy to see us. We started to think that there was a ray of light at the end of the tunnel. We duly made an appointment to see our GP.
24 September 1998
Terry and I go to see our GP and take the letter from Professor McKenna. We ask ‘can we please have a referral letter sent to London so that we can both be screened by Professor McKenna’s team to see if either of us has any of the conditions that can cause Sudden Cardiac Death in the Young?’. We also took the literature from CRY, but our GP had not heard about the charity and its work to help affected families. Our GP suggested that we should be referred to our local hospital in Wrexham to see if they can help us. We explained that we would prefer to be seen in London but we were told that it might not be possible to get funding for us to be seen out of our Local Health Board area. We are beginning to wonder if Lisa’s death had been caused by something genetic after reading the literature from CRY. We need answers and we will not give up until we get to the bottom of this.
October 1998
Our GP calls us into the surgery to tell us that Wrexham Hospital have suggested that we are referred to London as they will have more expertise in dealing with families who have suffered a loss to Sudden Cardiac Death in the Young. Our GP agreed to write the referral letter and he would make sure that the funding out of the area would be alright. I told Rachel about the referral and suggested that she should also be screened along with her two year old son, Jack. We are very concerned about Rachel as she has been suffering from blackouts which seem to appear when she is aroused from sleep due to the telephone ringing. Rachel has agreed to be screened and she saw her GP and asked for a referral for herself and Jack. Rachel lives in Nuneaton, so we have different GPs, but we would all like to go to London for the screening together as a family. Rachel was seen at her local hospital with reference to her blackouts and she had an EEG (tracing of the brain) done, but no doctor thought to check her heart. Lisa was still alive when Rachel first started to suffer from the blackouts.
December 1998
We receive an appointment letter from the hospital in London for March 1999. Rachel has also received an appointment for herself and Jack on the same date. Hopefully this could be the beginning of getting some answers surrounding Lisa’s death. We have been asked to take a copy of Lisa’s post-mortem report and a family history with us to the appointment with Professor McKenna. A copy of the post-mortem report is available from the coroner to immediate family members of the person who has died.
February 1999
We received a letter to say our appointment in London has been changed to July 1999.
July 1999
Terry has been taken poorly and admitted to hospital. Our appointment in London has now had to be changed to December 1999. Rachel and Jack’s appointments have also been changed to put them in at the same time as Terry and myself.
December 1999
The day has finally come for us to go to London. Rachel is now heavily pregnant with her second child and has, therefore, decided that she doesn’t want to be screened until after the baby is born. Terry and I travel to London the day before our appointment and stay in the hospital accommodation overnight. We didn’t sleep at all that night wondering how we would cope with the screening procedure. We arrived in the cardiology clinic and had our ECGs done. We were then introduced to Dr Elijah Behr (he was working on Professor McKenna’s team) who sat and listened to our story about Lisa’s death. Dr Behr read the post-mortem report and took a detailed family history from both of us. We then went to have our ECHOs done.
After lunchtime, Dr Behr saw both of us for a medical examination and then he gave us the news that Terry has a cardiac condition called long QT syndrome. Dr Behr told us all about the signs and symptoms of long QT (we had also read about them in the CRY literature), but Terry had never suffered from any of the symptoms. We both then went for exercise ECGs (on the exercise bike and wired up to the ECG monitor, etc) and then for blood tests (to look for long QT syndrome in the genetics). Terry then had a 24 hour holter monitor fitted. This was to look as his heart rhythm whilst he was both active and sleeping.
Dr Behr then saw us again for a very detailed discussion and he made us feel so at ease. He asked about Rachel and her blackouts and he told us that Rachel really should be screened immediately, as Dr Behr thought that Rachel may also be suffering from long QT syndrome and that she was in the “at risk” age of Sudden Cardiac Death. Dr Behr told us that he was 99% sure that Lisa had died from long QT syndrome. At last we had some answers. We now had to wait for the blood results to come back to see if Terry had the mutated gene. Dr Behr told us that the only way we would know 100% if Lisa’s death was due to long QT syndrome was to get her post-mortem tissue genetically tested, but before that could be done we would have to wait and see what Terry’s blood results revealed.
Terry was put onto beta-blockers, but unfortunately due to side effects he could not get onto the full dose to regulate his heart rhythm. After further ECGs, Dr Behr told Terry to stop taking the beta-blockers and he arranged for Terry to be seen by an electrophysiologist (a cardiologist who specialises in the electrical rhythms of the heart). Terry still requires regular ECGs and he is monitored very carefully.
We were devastated at Terry’s results, because if he had been diagnosed when he was younger, we would have had Lisa and Rachel screened and they could then both have received the appropriate treatment. We feel sure that if Lisa had been given an ECG earlier in her life she would still be alive today. However, that wasn’t to be, but we are desperately worried now about Rachel. We didn’t want to lose our other daughter and neither did we want our two grandchildren to lose their mother. Dr Behr told us that Rachel and Jack and her unborn baby all had a 50% chance of being diagnosed with long QT syndrome. The pain is getting worse, we are so concerned for Rachel and her family, how much more pain do we have to endure?
March 2000
Rachel has had a baby boy and is now making arrangements to be screened and she is also asking for the baby (Adam) to be screened along with Jack.
May 2000
Rachel cancels her appointment for screening at the last minute saying she doesn’t want to know if she has long QT syndrome.
August 2000
Rachel cancels another appointment in London. She still is in denial.
December 2000
Rachel cancels another appointment in London. She doesn’t want to know if she has the condition.
December 2001
We receive a letter from Dr Behr to say that Terry’s blood results show that he has the abnormal HERG gene (the cause of long QT syndrome type 2). It has taken two years to get the results of the blood tests. We are now very concerned for Rachel and both of her children, Jack and Adam.
January 2002
There is huge press publicity and also a TV programme about a family who have lost 16 members of a family over three generations to long QT syndrome. We decided to send a copy of this article to Rachel along with a copy of the letter from Dr Behr with Terry’s blood results. After a few days Rachel phoned me to ask if I could possibly arrange an appointment for her with Dr Behr for screening for herself and both of her children.
February 2002
Through CRY we were able to arrange this and Rachel and her children were screened in London in February 2002. This was a nightmare time for Terry and I, as it was going through our minds that we could lose Rachel too if she was diagnosed with the condition. We get the phonecall from Rachel that we were dreading – she too was diagnosed with long QT syndrome. Jack had an ECG done, with no abnormalities showing, so he was given a mouth swab for DNA and Adam was too distressed to have anything done. Rachel had the blood test to see if she had the abnormal gene like her Dad.
After going to London Rachel was put onto beta-blockers, the normal line of treatment for long QT syndrome. Unfortunately she couldn’t tolerate the beta-blockers – the same as her Dad – and she had to return to London to see Dr Behr. He gave Rachel no alternative but to have an ICD fitted and he gave her just four days to make her decision. Dr Behr told Rachel that as she was having symptoms and was also at the “at risk” age the operation was the only way he could guarantee keeping her alive. Rachel decided to go ahead and agreed to the operation.
April 2002
Rachel received a phone call from Dr Behr to say that both she and Jack have the abnormal HERG gene and just to confirm Jack’s DNA swab he was to have the blood test. This confirmed what the DNA swab had indicated. Terry and I write to the coroner to explain about the new findings of the abnormal gene in Terry, Rachel and Jack and that we would like him to consider releasing Lisa’s post-mortem tissue for genetic testing. The original coroner has now retired and the new coroner seems very interested in what we have told him. He will make arrangements with the Countess of Chester Hospital to release Lisa’s post-mortem tissue to Dr Behr.
May 2002
The coroner for Cheshire (Mr Nicholas Rheinberg) has written back to tell us that he will co-operate with Dr Behr and will request the release of Lisa’s post-mortem tissue. Mr Rheinberg writes “It seems to me that the evidence that you have given may well provide the missing link into Lisa’s death. As you will be aware long QT syndrome cannot be diagnosed post-mortem which is why no doubt Dr MacKay apparently reported at the inquest about the possibility of an electrical fault. I am sorry to tell you that Dr MacKay has since died. I hope that Dr Behr may be able to answer some unanswered questions”.
June 2002
Rachel goes to the hospital in London to have her ICD fitted.
July 2002
The Countess of Chester Hospital releases Lisa’s post-mortem tissue to Dr Behr in London.
November 2002
We write to the coroner again as we have not heard anything about Lisa’s post-mortem tissue testing. We receive a letter back from the coroner telling us that he has contacted Dr Behr and it will be many months before we get the results of Lisa’s tissue as these investigations are undertaken in batches. The coroner quotes “The good news, therefore, is that the matter has not been ignored or forgotten but the bad news is of course that there will be further delay”. It was suggested that we contact Dr Behr periodically to see if he has any news.
March 2003
I contacted Dr Behr, but he still has no results for us. He promises to contact me as soon as he has any news. Therefore I will just have to be patient and wait.
January 2005
Rachel takes Adam for a blood test to see if he has the abnormal HERG gene.
March 2005
I received an email from Dr Behr to let me know that Lisa’s post-mortem tissue results have come back from Sweden – Lisa DID HAVE THE ABNORMAL HERG GENE – letter from Dr Behr to follow. Our emotions are running high now; we have the results after all this time. We phoned Rachel to tell her. She was pleased that we finally have an answer. All the hard work will start now as we intend to ask the coroner to consider re-opening the inquest. The letter comes from Dr Behr in which he states “I wish to confirm to you in written form that we have detected the long QT syndrome subtype LQT2 mutation in your late daughter Lisa Jane Browne (DOB 06.05.1970). This was performed using DNA extraction from post-mortem tissue and undertaken on a research basis. This confirms that long QT syndrome was the cause of her sudden death. I hope that this is helpful to you and I have copied this in to Mr Rheinberg, the coroner for her case”.
April 2005
We write to the coroner asking him to consider re-opening Lisa’s inquest. The coroner writes back informing us that it will be a difficult procedure, very costly and that we have no guarantees of success, but he feels that we should go ahead and he is asking his department to fund the legal costs as he feels it is in the public interest as well as the family’s interest that the original inquest be quashed and a new one opened.
May 2005
Rachel receives the news that she has been dreading – Adam also has the abnormal HERG gene and he too has long QT syndrome. Arrangements are now made for both Jack and Adam to have full screenings by Professor McKenna at Great Ormond Street Hospital. Both boys are gene positive for long QT syndrome.
I have a long telephone conversation with the coroner and he has informed me as to the possible options of getting Lisa’s death certificate changed to show a new cause of death. We would have liked a new death certificate, but the law states that this cannot be done. The original death certificate can be amended, but this will require a Judicial Review in the High Court in London. There is so much to take in and think about, I don’t know where we will find the strength from, but we have come so far since Lisa died, we have decided that we have to continue our fight. The coroner sends the letter from Dr Behr to the pathologist who issues an addendum to be added to the post mortem report. We have been sent a copy of this.
We receive a letter from the coroner enclosing a copy of the addendum written by Dr Hamid, Head of Pathology at Countess of Chester Hospital. The addendum states: “On the balance of probability, I feel that the cause of death would be best regarded as:-
1a. Acute left ventricular failure
1b. Long QT syndrome (due to sub-type LQT2 mutation)”
The coroner further says; “Were I to be holding an inquest into the death of your daughter and were Dr Hamid to give sworn testimony in line with the addendum that she has written, it is likely that I would make a finding that your daughter had indeed died from acute left ventricular failure due to long QT syndrome. The logical consequence of such a finding would be a conclusion that your daughter had died from Natural Causes, rather than an Open Verdict”.
June 2005
We receive a long letter from the coroner which reads:-
“As you know, the original inquest was held by my predecessor, Mr John Hibbert. Once a coroner has reached a verdict, the proceedings come to an end and the coroner (or in this case, his successor) cannot resume an inquest without an order from the High Court. The process is known as Judicial Review and is a complicated one. There is no appeal against a coroner’s verdict. Instead, in appropriate circumstances, an interested party can apply to the High Court for an order that the original inquest is set aside. If the High Court makes such an order, a new inquest can then take place. There are a number of grounds for Judicial Review, including insufficiency of enquiry or other irregularity.
However, in addition, in certain circumstances a Judicial Review to set aside an inquest can be successfully brought on the grounds that new evidence, not available at the original inquest, has come to light. If the High Court accepts that the new evidence means that the original verdict was unsafe and there is good and sufficient additional reason for setting aside the inquest, an order will be made accordingly. Normally it would be a close member of the family of the deceased person who made an application for Judicial Review. However, in rare circumstances, the coroner himself or herself can make such an application on the grounds of new evidence. However, again the High Court has to be of the opinion that a useful purpose will be served by setting aside the inquest.
In the light of the opinion of Dr Hamid, there are three possible ways of proceeding. The first choice may be to do nothing further. You have initiated a complex investigation which has vindicated your long-held view that the cause of your daughter’s sudden and unexpected death could be determined. The records have been set straight in that the original post-mortem has now been amended to show a cause of death. The second possibility is for you to institute Judicial Review proceedings. A solicitor will be able to act for you in this regard. The first step will be to make an application to the Administrative Division of the High Court. It is possible that Legal Aid will be available. The third possibility is for me to institute Judicial Review proceedings. I am willing to do this if you would like me to do so and if my funding authority agrees. The proceedings would be served upon you as interested parties and you would technically be made defendant to the proceedings, albeit that you would consent to an order being made, setting aside the original inquest. If this application is successful then I can set a date for a new inquest hearing and call appropriate witnesses, including yourselves, to give evidence.
There is no guarantee that if an application is made for Judicial Review, it will be successful. It is possible that the High Court takes the view that no useful purpose will be served by having a new inquest. Were you to decide, one way or another, that you wanted a Judicial Review, I would hope that with both you and me asking the High Court to set aside the original inquest, the High Court would agree – particularly if I point out that there will be no huge expense involved in holding a further inquest. However, at the end of the day, the matter is at the discretion of the High Court. I am sorry that I have had to write to you at such length and on such a complicated subject. However, once you have had an opportunity to digest this letter, perhaps you could let me know how you would like to proceed”.
We write back to the coroner and tell him that we would like to take the third option available to us. Terry, myself and Lisa’s husband have all signed letters of consent and sent them to the coroner.
July 2005
Jack and Adam have full screenings by Professor McKenna at Great Ormond Street Hospital where the long QT syndrome is evident on their ECG tracings. Both boys are started on beta-blockers. They are tolerating them well. They will now be seen very regularly at Glenfield Hospital in Leicester by a paediatric cardiologist. It has been suggested that both boys will require ICDs when they reach their early teens, but in the meantime they will be controlled by beta-blockers for as long as is possible before surgery is considered.
We have received a letter from the coroner to confirm that his Funding Department have agreed to pay all the legal costs involved in applying for the Judicial Review. The cost of this will be thousands of pounds.
We received draft papers from the coroner “In the matter of an application to Her Majesty’s Attorney General for his FIAT” and “In the matter of a proposed application under section 13 of the Coroner’s Act 1988” and “In the matter of Lisa Jane Browne Deceased”. We have had to read and approve these documents before they are sent to the barrister.
We receive a letter from the coroner informing us that the first stage for the Judicial Review is to obtain the permission of the Attorney General – or his “FIAT” as it is called. The coroner states “I am afraid that it is by no means certain that we will obtain permission but I will give it my best shot”.
An extract from the legal document prepared for the Attorney General reads: “As will be apparent, the new evidence has become available by reason of the further enquiries initiated by Mr and Mrs Harley. They support this application for a new inquest. There is now evidence available, which subject to scrutiny at a new inquest, may very well establish the cause of their daughter’s death. They and their family are entitled to the comfort of a conclusion of an inquest correctly recording and reflecting that cause. It now appears that an Open verdict may well have been erroneous.
Further and in any event the coroner invites the Court to conclude that there is a broader public interest to be served in directing that another inquest be held. The discovery of new evidence in relation to the deceased’s cause of death requires scrutiny at a public hearing for the following reasons. If left undiagnosed and untreated, long QT syndrome can result in sudden and unexpected death, as so tragically occurred in the case of this young woman. If diagnosed the condition can be treated. In the case of the deceased her lethargy and feeling of ill health were wrongly attributed at one stage to depression and she was prescribed dothiepin. There is, however, a very distinct contra-indication for the prescription of dothiepin to someone suffering from a heart condition. An inquest will assist in bringing these matters into the public domain.
Further, there is a widespread view held by coroners and pathologists that long QT syndrome is incapable of diagnosis post-mortem. The research carried out by Dr Behr demonstrates that this view is incorrect. The syndrome is a genetic disorder. Post-mortem discovery has the potential to save the lives of others and it is important that pathologists appreciate that specialist referral of tissue may provide a diagnosis. A new inquest will help bring these matters into the public domain and to public attention”.
The coroner informs us that the memorial documents have been drafted into a statutory declaration which we now have to sign. The coroner suspects that there will be a fairly long delay while the Attorney General considers the papers. If the Attorney General grants his FIAT the solicitor then has just 6 weeks to file the application in the High Court. As the coroner has said “I am afraid it is therefore a case of slow, slow, quick, quick slow”.
Another set of documents arrive from the coroner to be signed ready to be sent to the Attorney General.
August 2005
The prepared declarations, exhibiting the memorial addressed to the Attorney General have now been forwarded for consideration. The barrister who prepared the papers believes there is a 50% chance of the application being successful. The coroner hopes that the chances are greater. It is a case now of wait and see.
October 2005
We receive a letter from the coroner which reads “I am very pleased to tell you that I have been granted the Attorney General’s FIAT to make an application for Judicial Review. This, I am afraid, is only the first step in the proceedings. I have still to convince the High Court to set aside the original inquest. However, it is a move in the right direction and we could have fallen at the first hurdle”
We receive another letter from the coroner enclosing draft consent orders for signature. The letter also reads “Yesterday, I was informed that within the Attorney General’s Office, officials had recommended a refusal of our application for a FIAT. It was apparently only upon the personal intervention of the Attorney General that the FIAT was granted, on the grounds that a public interest would be served by re-opening the inquest”.
This case is proving to be very complicated and it’s taking its toll on our health.
I have to make a new statement for the benefit of the coroner. Lisa had taken many “over the counter” medications for colds, sore throats, coughs and sinusitis. It appears that many of these medications are on a list of “banned drugs” for someone with long QT syndrome. There is a comprehensive list of these “banned drugs” available on the internet and anyone with the condition should carry this list with them at all times in case they need to be given medication in any emergency. The new statement is in more detail than the first one made shortly after Lisa’s death.
We receive the “Particulars of Claim” and all the documents titled “In the High Court of Justice Queens Bench Division Divisional Court” for signature.
We are informed that “In the light of consent of the Interested Parties to this application the Court may conclude that it is appropriate to deal with this application by consent and without the need for a hearing”.
November 2005
We receive more documentation from the coroner which has been served on us for our attention. We are now waiting to hear from the High Court. Hopefully the case will be rubber stamped through without the need for a court hearing.
We receive documentation from the High Court advising that the matter has now been entered in the Administrative Court Warned List as being ready to be heard by a single Judge. A hearing date will be fixed shortly.
December 2005
We receive a letter from the coroner enclosing a “Statement of Reasons” for signature by ourselves and Lisa’s husband (as he was Lisa’s next of kin at the time of her death). The coroner states in his letter “I am hopeful that with such a compelling Statement of Reasons which, I am satisfied from talking to you, does properly reflect your feelings, the Court will at last grant the Order that we require”.
January 2006
We receive more correspondence from the coroner and it would appear that the case is now to be heard in front of two or possibly three Judges and not a single Judge as was first hoped for. We are being tried and tested to the end of this procedure. It is taking so much strength and energy to keep on fighting, but it can’t be too long now before we get an answer from the Court.
15 February 2006
I receive a telephone call from the CRY Office. The media are trying to contact me and also the TV news. It would appear that our case was heard in the High Court on 14 February 2006 and that we were successful in obtaining the Order for a New Inquest Hearing. This is the first I have heard about this, therefore I contact the coroner immediately. Mr Rheinberg is in an inquest all day, but his secretary has checked his post, email and telephone calls and there has been no confirmation of the hearing to the Coroner’s Office.
I find that two newspapers are reporting the story and that it is also on the internet. We are very annoyed that we have had to learn the news from the media. The coroner and the family should have been notified before anything was published in the press.
16 February 2006
I receive a telephone call from the coroner. He is disgusted at the way we have all heard the news that we have won our case. Mr Rheinberg has received confirmation today from the barrister who has been acting on our behalf.
17 February 2006
We receive the official paperwork from the High Court confirming that we have been granted the Order for a new Inquest.
22 February 2006
We received a letter from the coroner confirming that the new inquest will be held on Friday 28th April at 2pm at the Coroner’s Court in Warrington. It is also confirmed that Dr Behr, Dr Bushra Hamid (pathologist), Lisa’s GP and myself will all be required to attend the inquest to give evidence. Lisa’s husband is being given the option of either attending or having his original statement read out at the inquest. The coroner has asked for maximum press publicity for the inquest as he wants the public to be made very aware of Sudden Cardiac Death in the Young (under 35). The coroner has told me that Lisa’s inquest will be the first inquest he has had to re-open during his 14 years as a coroner. He also stated that out of all the thousands of inquests held in the UK each year only about 25 ever need to be re-opened.
15 March 2006
We received a letter from the coroner advising that the pathologist is not available to attend on the 28th April 2006. The coroner has asked if we are willing for the pathologist’s statement and post-mortem report to be read out by him in the absence of Dr Hamid. The coroner also advises that the GP has not yet responded to his letter.
17 March 2006
We received an email from the coroner advising that Lisa’s GP has now responded and the coroner will send us a copy of the GP’s statement.
23 March 2006
I have today received my “Notice to a Witness to attend before an Inquest”. This has a form attached to complete and return to the coroner. This is my official document informing me that I will be required to give evidence at the proceedings.
16 April 2006
Nothing could have prepared me for the way I have been feeling for the last two weeks. I am extremely depressed and tearful. I am both physically and mentally exhausted. I just feel that I have been taken back to the beginning and feel as I did immediately after Lisa’s death. Terry is also similarly affected. We are counting the days now to the inquest. We didn’t think it would be so stressful. We have come on so far and have been strong for a long time now, this has come as totally unexpected. It just feels like we have received the news that Lisa has died, but there is no funeral to arrange this time.
27 April 2006
There is just one more day to go now to the inquest. I feel I need today for time for “myself”, to prepare for the ordeal that is to come – i.e. to hear all of the evidence again and fresh evidence as well.
28 April 2006
At last the day of the inquest has arrived. I feel very emotional.
I have come out of the inquest and feel that a weight has been lifted off my shoulders. Terry and I now have the answers that we have so desperately needed – that Lisa DID die from long QT syndrome.
I read out the following press release to waiting reporters:-
“Lisa’s family wish to thank, most sincerely, Mr Nicholas Rheinberg, the coroner for Cheshire, for his help and support which has enabled this new inquest to take place. Grateful thanks also go to Dr Elijah Behr for his care and dedication in screening us all, and for arranging for Lisa’s post mortem tissue to be genetically tested.
We have heard evidence given today that screening can save lives. Long QT syndrome has affected five members of our family over three generations. An ECG test could well have saved Lisa’s life. All of the causes of sudden young cardiac death, many of which are genetic, are treatable once diagnosed and most people are able to live a relatively normal life.
There are at least 8 deaths a week to sudden young cardiac death, the majority of which could be prevented if there was a national screening programme for all teenagers at around the age of 14 years. The government pays to vaccinate all children, and is now considering providing hearing tests for all newly born babies. How many more young people have to lose their lives to sudden young cardiac death before the government will agree to finance the necessary ECG screening?
It’s impossible to explain the depth of pain and devastation that these tragic deaths cause.
If anyone has had a sudden young cardiac death in their family, or a young individual suffers from any of the symptoms which are chest pain (exercise related), breathlessness, palpitations, blackouts and dizziness; please go to your GP and ask to be referred to a specialist cardiologist. Too many people are misdiagnosed, being told that they have epilepsy or stress, when in fact the problems may well be related to the heart.
Eight years has been an exceptionally long time for our family, but today’s inquest has given us the answers that we so desperately needed. We will now finally be able to bring about closure following Lisa’s tragic death.
The charity Cardiac Risk in the Young has provided us with valuable advice and support following Lisa’s death. For more information on CRY please telephone 01737 363222 or visit the website at www.c-r-y.org.uk”
29 April 2006
There has been a lot of publicity in both national and local newspapers today, and the inquest was reported on the news on the television yesterday evening on both BBC and ITV.
Lisa’s cause of death has now been recorded as:-
1a. Acute left ventricular failure caused by
1b. Long QT syndrome (due to sub-type LQT2 mutation)
Natural Causes
We now have closure following Lisa’s death. Not a day will go by that we will ever forget the happy memories that we have of Lisa. Although her life was so tragically cut short, we are so proud to have had her for 27 years. May she rest in peace.
