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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
headlines “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, 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 ECG’s 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 ECHO’s
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 ECG’s (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 muted 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
betablockers, but unfortunately due to side effects he could not get onto the
full dose to regulate his heart rhythm. After further ECG’s Dr Behr told
Terry to stop taking the betablockers 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 ECG’s 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 out 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 on to betablockers, the
normal line of treatment for Long QT Syndrome. Unfortunately she couldn’t
tolerate the betablockers, 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 tells 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, but 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:-
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 the
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 decided, 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 in
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
betablockers. 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 ICD’s when they reach their
early teens, but in the meantime they will be controlled by betablockers 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 also the Television.
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 28 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 28
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 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.
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