UK COLUMN LIVE SPECIAL — PAEDIATRIC & DRUG COMPANY ABUSE
THE DEATH OF HELENOR BYE AND ITS FOUR-DECADE COVER-UP
See also: Hansard and Silver Bullet Magazine
Derek Bye (with his wife Joan off-camera) of South Wales is interviewed on his daughter’s death from medical negligence in 1977. The Byes have campaigned about these problems in the nearly forty years since.
They have learned that unlicenced medicines are given to children and that the media is controlled by Parliament. Editors have repeatedly stopped their story from going out nationally.
His message is: “Don’t be afraid to challenge [doctors] … We’d like to see unity between the patient and the doctor. Parents know their children best, and sharing that knowledge with the doctor, you can act as a team. The child then is managed in the best and most suited way.”
4’] Brian Gerrish shares that his mother-in-law was also the victim of clinical negligence.
4’] Helenor was a healthy 11-year-old living in Porthcawl. She appeared to develop an infection after paddling in the sea during a summer holiday, and complained repeatedly of a urinary tract inflammation. David Parry, the family’s then GP (family doctor), referred her to paediatric consultant Trevor Hyfyn Jones (now deceased), who had been working in Bridgend for a number of years, and he immediately used an IVP (a dye injected into the bloodstream) to diagnose her (and IVPs are only supposed to be used in cases of blood in urine or of gall stones). This was on 13 July 1977.
Helenor had a very bad reaction to the IVP, suffering anaphylactic shock (as can also happen with bee stings or peanut ingestion) but her parents were told to rest her for half an hour and just take her home.
7’] Parry, the GP, promised to come and see Helenor at home later, but they received a message early that evening that he would not be able to do so. She was readmitted to hospital comatose and remained there for five days.
8’] Jones, the consultant, was now (unbeknown to the Byes) suppressing the symptoms with Mogadon and Valium. However, an EEG (electroencephalograph, brain test) conducted outside Bridgend had revealed that she was suffering from encephalitis (brain inflammation), which would have been well treatable.
The medical records came out only 24 years later, revealing that Helenor had been put on valium with Jones completely ignoring the EEG results. Mr Bye was familiar with the medication and side effects of epilepsy (as he worked with epilepsy sufferers) and knew that her symptoms were not concomitant with that.
Yet Jones, “intoxicated with his own arrogance”, insisted that Helenor take epilepsy medication and threatened that if the Byes questioned this, she would be made a ward of court.
12’] Helenor was on 800 mg per day of the epilepsy medication Epilim (valproic acid or sodium valproate) for months after the initial anaphylactic shock from the dye.
Liver function and blood level tests were supposed to be taken during this medication, yet they were not, so it appeared that “Helenor had been put on death row for eight or nine months”. It then became apparent that Helenor had never had epilepsy and Jones then withdrew her medicine, but instantly, not gradually (which even a layman would know is idiocy). This triggered a status epilepticus (continual epileptic attacks) in her. At that time, Jones also admitted to the Byes that Helenor had not been suffering from epilepsy.
13’] Jones was now describing the problem as mental and having her treated as a psychiatric patient, and wrote at one stage “the mother still thinks the condition is medical”.
15’] Helenor died at Bridgend on 24 April 1978, about nine months after the initial hospitalisation. She had ultimately been transferred to the University Hospital of Wales.
15’] Mr Bye stresses that “we failed to ask for a second MEDICAL opinion”. It was doing no good for Jones to call in child psychologists, psychiatrists, etc. Nor was Jones consulting Helenor’s school.
A nurse had to take the Byes aside secretly to tip them off that Professor Peter Gray of University Hospital Wales (UHW) should be consulted for a second opinion.
16’] After her death, with his daughter’s emancipated corpse under a shroud, Mr Bye discovered clips at the back of her head and realised to his horror that body parts had been removed from her. “One is only expected to give a gentle kiss on the cheek”, but by cradling the back of her head, he made this awful discovery.
19’] Consequently, this is an ongoing case since 1977 because the body parts have never been returned.
South Wales Police always strongly dissuaded the Byes from asking anything about a criminal investigation.
20’] Trumped-up charges including driving offences and terrorism in a children’s ward have been levelled at both Mr and Mrs Bye as they have continued to ask about their daughter’s missing body parts.
Discussion of how these were demonstrably false claims by the police designed to intimidate the Byes.
Mr Bye describes his experiences with the authorities as incessant “verbal thuggery”.
21’] Dr Sarah Brewer produced a good comprehensive article “Who killed our daughter?” (shown on screen) about the case, which was ignored.
23’] Stones have been thrown at Helenor’s grave and parts of it have been broken off because of the engraved words on it: “a conspiracy of silence by the British Paediatric Association”.
People’s knee-jerk reactions of disgust to this epitaph are described by Gerrish in detail and he sums them up as a failure to understand what goes on in the care system.
25’] The “lies and the cover-up and the bullying” continue to this day, Gerrish points out.
26’] The Byes have had to bury body parts of their daughter four times. A 23 August 2006 BBC News online article, “Grief over girl’s fourth funeral”, led to little response other than sympathy.
28’] What the Byes have not achieved in all the decades of campaigning is openness about other child medical negligence cases.
29’] The UK Column (newspaper) first covered Helenor Bye’s case in June 2008. Cherie Blair saw the Byes at that time and she wrote back to them within five days, telling them that she could do nothing, but “both of you are in my and Tony’s prayers”.
31’] Nor did the Byes get any help from Kenneth Clarke of the Conservative Party.
32’] Sanofi-Aventis, the manufacturers of Epilim medicine, have not admitted any problems with it or admitted the lack of data on reactions in children. “It was produced solely to treat epilepsy in adults, but the Medicine Act makes doctors immune from prosecution if they use it to treat children,” Bye says.
Doctors simply weigh the child and write it up as a small adult for prescription purposes. “This is not the way to treat children,” Bye adds.
34’] It has been suggested to use forensic research to determine the consequences in children of taking medicines such as this. Bye insists that Helenor’s body would still yield results, since the Moors Murders victims’ bodies have yielded results even after thirty years buried in boggy ground.
Forensic toxicology has not been conducted on Helenor or similar cases, either.
35’] Some of Helenor’s treatment notes are shown on screen and discussed. The nursing notes state: “Appeared as a child portrayed in the film ‘Exorcist’.”
She was shivering throughout these eight or nine months of treatment and was being treated as a psychiatric case. The notes state: “Spoilt child.”
38’] She was forced out of bed, forced to eat roast dinners, and being slapped on the back by a senior nurse who would be “more suited to a concentration camp than a paediatric ward” (as Bye puts it).
39’] Helenor appeared frightened of Jones. Nurses were prevented from feeding back to doctors any observations tending to suggest that she was being wrongly medicated and might actually have a physical medical problem.
40’] Gerrish summarises Jones’ actions as a paediatrician covering up his mistake with the IVP dye by having Helenor treated as if she were epileptic.
42’] Bye is sure that his daughter was “put on death row” to punish him for having challenged Jones’ diagnosis of his daughter.
43’] Helenor died an awful death, suffering herniation of the brain (the brain swelling up and pressing on the skull) among other symptoms.
43’] Many strange things happened in the hospital (which has since been “closed”, i.e. relaunched) in the weekend of Saturday 23 and Sunday 24 April 1978 when Helenor died.
On the Friday, a ward nurse had told the Byes to contact Professor Gray at UCW for the long-awaited second opinion. However, Jones as the consultant paediatrician in the case then refused to release Helenor to that hospital, “only twenty minutes up the road” from Bridgend.
Bye was even told by Jones on the phone, “Good God, you haven’t even consulted your GP about this [referral].” Yet Parry, was refusing to have anything to do with his patient.
Although Jones was refusing to come into hospital to see the parents, he had in fact come in to hospital on the Saturday and taken home all Helenor’s medical records, leaving the registrar and nurses without any documentation.
46’] Finally, Helenor was transferred to UCW late on the Sunday evening, but Jones refused to travel in the ambulance with Helenor.
In the end, a geriatric nurse was sent to travel with her but she had no experience with the case.
47’] When the ambulance arrived at UCW, the paediatric ward was found to be shut and Helenor was left on the frozen pavement outside.
The ambulanceman was heard to state, “This appears to be another medical cock-up from Bridgend Hospital”.
48’] Helenor was taken into Intensive Care as soon as horrified Professor Gray saw her (his reaction was, “Emergency, emergency!”), and her parents did not see her again until she was dead.
Gray left UCW later that day to go to Great Ormond Street, London.
Paediatrician Corrie Weaver was in charge of the case in his absence; she came back to the Byes to ask for permission for biopsies of the liver, kidney and brain. As she put it to them, these were treatment-related and imperative for her survival. Mr Bye always questioned this claim.
49’] Mrs Bye felt that her daughter had died in the ambulance and refused to sign documents, but Mr Bye did sign three documents, which have since gone missing.
49’] Finally, the following Thursday 27 April, permission was sought from the Byes to switch off the life support machine. Weaver notified Cardiff Coroner William Haddons.
50’] It has only since come to light that on 24 April, Gray had already stated “Patient deceased”. Instead of taking biopsies, the hospital had interpreted Mr Bye’s signature on the biopsy request form as giving permission for body parts to be taken.
51’] Bye states: “During that time, they were removing the evidence. She was put on a saline drip to flush the toxins from the medication out of her body … Also, the organs were removed before Helenor had her biopsy, so the pathologist didn’t have a lot to work on.”
51’] A temporary death certificate was issued. The Byes had by this time returned to Porthcawl to care for Mrs Bye’s elderly mother and to break the news of Helenor’s death to their young son Lyndon.
53’] As regards the “major fight” (as Gerrish puts it) for the Byes to obtain certain hospital documents, which took upwards of 20 years to be disclosed, Bye says: “I think they put the shutters down on us immediately … We were intimated by the police … we were just an embarrassment [to them].” In the end, the Byes used embarrassment techniques: “we just barged in” when other patients were present.
The coroner’s inquest did not convene until May 1980.
54’] An article in The Lancet of 2 August 1980 was posted to the Byes. In it, in a self-congratulatory manner, Jones states that Helenor’s supposed epilepsy had been “confirmed by an EEG”. Yet Jones simply lied about that.
55’] The problem is that The Lancet accepts everything that doctors write as gospel truth.
The Byes wrote to the editor of The Lancet to correct the false information given and were told that they would be ignored because they were not professionals.
56’] The 1980 article also lies that Helenor had hyperammonaemia (ammonium build-up in the blood) induced by the Epilim.
57’] Shown on screen from among the Byes’ huge archive is a letter from the University of Texas Medical Branch to the Byes’ MP Gareth Wardell, dated 30 July 1984, admitting the laxity of introduction of Epilim into the UK medical market.
In it, David L. Coulter, Assistant Professor, Departments of Paediatrics & Neurology, is concerned about the UK’s entire drug licencing system. He writes:
“… my major concern at this point would be the regulatory processes that are currently used in England to control the introduction and use of medicinal drugs for human use. I was told “off the record” by some people who work for Abbott Laboratories that they had seen some of the documentation admitted prior to release of Epilim in England concerning the safety and efficiency of the drug. The scientific quality of this data was very poor. They told me that in some cases, the names of children started on the drug had not been recorded, so that no followup was possible. In other situations, children started on the drug were not followed up at all, or only after a period of a year or two. In most instances, monitoring for possible toxicity (including liver function studies) was never performed. Despite this [?remarkably] bad documentation, the drug was approved for use in England …
“… Helenor died in 1978, but no one realized Epilim was responsible until years later. How many lives might have been saved in England and the U.S., if physicians had known then what we know now about the potentially fatal liver damage caused by Epilim? Why did the British medical establishment ignore her death for so long?”
Commenting, Gerrish suggests that the answer is pharmaceutical profits in the billions.
At the close of his letter, Professor Coulter states, “I think it may be worthwhile to consider the overall drug regulation process in England. It seems to me that the government should protect the public from premature introduction of drugs, before they have been completely and adequately tested for safety and efficiency.”
59’] David Seymour of the Daily Mirror wrote up the case on 21 March 1984 on an internal page (shown on screen) and received an avalanche of phone calls from concerned relatives of others being treated with the same drug, which bumped it up to the front page. The pharmaceutical company then threatened the Mirror with legal action.
60’] A Dr Michael Salmon is mentioned in that Mirror article. He “wanted to shut the whole thing down,” Bye states, and it has recently been discovered that he has been charged with paedophilia.
61’] A letter from DS Kevin O’Neill of South Wales Police dated 22 April 2004 (shown on screen) tries to bully the Byes into providing blood samples.
The Byes have since learned that the aim at this time was to discredit the case by claiming from DNA profiles that Helenor had congenital hyperammonaemia. As part of this, her parentage was to be called into question.
A portion of skin from Helenor had been sent off to Frenchay Hospital in Bristol, and when the Byes notified South Wales Police of this, they raced up the motorway and sent the sample to Professor Leonard at Great Ormond Street Hospital in London, but his team was unable to match her DNA profile with mouth swabs provided by the Byes.
63’] South Wales Police then sent a report to the Crown Prosecution Service in York (which specialises in paediatric cases) and had told the CPS that there had been confirmation (!) that Helenor had had the very rare genetic condition that causes hyperammonaemia. As a result of this, the Byes were told to provide blood samples at their local surgery, Lilliput Surgery in Poole, to be sent off to prove the prosecution’s case. Yet the Byes never provided samples. Mr Bye calls this attempt at prosecution “corruption” and Gerrish calls it a “little escape route” for the authorities.
64’] The corruption is proven by the fact that in November 1978, the Byes and and their son Lyndon had all given blood samples and Professor Gray of UCW had already established that there was no such genetic problem in the family.
65’] Unknown to the medics in South Wales, the Byes went to Great Ormond Street to speak to experts about this and amazed the experts with the unprecedented birth of a healthy son to a supposed carrier of hyperammonaemia. This is remarkable because there is no case known to medicine of a male foetus surviving to birth if his mother is a carrier of hyperammonaemia.
66’] South Wales Police had been trawling the Byes’ neighbours in Porthcawl trying to get statements to back up Jones’ assertion that Helenor had been an alien child from birth.
67’] Sanofi-Aventis’ own website contains warnings of the very side-effects of Epilim, including hyperammonaemia.
68’] Parliamentary questions from Hansard are shown on screen. Kenneth Clarke had, when Minister of Health, approved Epilim in the UK.
In 2010, 200 affected families took their case to the Royal Courts of Justice to prove that Epilim had caused deformities in neonates, and Clarke withdrew their legal aid on the very day that the case was due to be heard. The families had the news broken to them and were ushered out of court.
70’] Corrie Weaver, the retired paediatrician who was in charge of Helenor’s case at the time of her death, suggested (including in a letter to the Byes) that she should be invited to to talk to the Byes’ MP within the Palace of Westminster, in order that her remarks would be covered by parliamentary privilege. Their MP (Robert Symes), however, was only prepared to give her an hour’s slot at his constituency office in Poole (not covered by parliamentary privilege).
“A coroner is a law unto himself, and he can pick and choose who he has as a witness. Selective witness-calling,” Bye says.
In a 17 March 2012 letter, Weaver states that she was never called to give evidence to the coroner, nor were any of the nurses involved in Helenor’s final care.
So how can South Wales Police have claimed that they carried out a thorough investigation, having failed to interview the key witnesses?
Gerrish points out that this is an established pattern of deliberate failure on the part of British constabularies to investigate politically unfortunate alleged crimes involving children.
72’] Every time the Byes wrote to their MP, Robert Sims, in Poole, they sent it by registered post or recorded delivery. He repeatedly failed to acknowledge receipt, making him "typical" of many MPs, Mr Bye says.
One Friday afternoon, Mrs Bye asked the question out loud in his constituents’ surgery whether one should take the law into one’s own hands if one’s MP refused to do his job. On the Saturday morning, Dorset Police were dispatched, having had a report that the Byes were planning to commit a crime. The constable attending was given details of what the Byes had gone through and left in shock.
74’] “It’s a lot more difficult to cover up the death of a twelve-year old child than it is the death of a baby,” Bye notes, and babies continue to die questionable deaths in their droves without it being picked up.
What his campaigning has highlighted is “deficiencies in the Coroner’s Court and deficiencies in the [regulation of the] medication given to children”, which he is “trying to unravel and expose so that loving parents can protect themselves from what’s going on in these so-called caring establishments”.
75’] Gerrish emphasises in closing that the good people in the NHS need to come forward and speak, and that British MPs are now part of the conspiracy by condoning the silence or even actively helping the cover-up.