Tuesday, 14 August 2007

Cot Deaths and Vaccines - Child Protection turned on its head

Recently a new paper was published by Hey and Bacon on the sensitive subject of how many mothers might have murdered their babies who died of 'cot death'. Yet a known and well researched link (under a heavy cloak of commercial secrecy) is that of an adverse reaction to some vaccinations but this is never mentioned. Over the years there have been many forms of spin and shifting sands of blame and counter blame but none so deeply distressing as the accusation that a mother has killed her child.

What stands out when mothers are accused is that adverse reactions to vaccine are routinely NEVER included in the differential diagnosis. This is deeply worrying, as it is a well known form of iatrogenic abuse. However rare, it happens, but if we do not acknowledge that it happens, and could have happened to the child in question, then as all other possibilities fall away, the mother stands accused.

Over the last decade we have seen dramatic developments within legal circles when it was established that Professor Sir Roy Meadow gave a wrong statistic in the case of Sally Clark, the mother whose children died after vaccines were given. His 73 million to 1 statistic was applied to the possibility that the children could have died from natural causes. It shouted out the message that these were impossible odds, so the mother must have killed them. A possible link to vaccines was never even brought into the Court. Professor Meadow was struck off and then re-instated as Expert opinions are just opinions, after all.

Sally Clark has now died as well as two of her children and we now have another published paper by Hey and Bacon which has raised the issue again and appears to want to take us back to the old position that more mothers do kill their children, supporting Meadow's thinking, even though the statistic he used to back it up and the way in which he used it has been thoroughly discredited.

The recent Hey and Bacon BMJ (British Medical Journal) article was written about by various people and Nigel Hawkes at Times took up the story.

Times Online allows for comments and my own comment was published along with a medic who writes in support of Professor Sir Roy Meadow and the idea that murder is more common than recent legal cases and the media interpretations would have us believe.

A cynic might suggest that this was a clean up operation. A non cynic might say this was new research backing up Meadow's thinking about mothers and murder.

However, this was not new research and I was to discover that Hey and Bacon did not even have access to the records of the cases in the research by Carpenter et al.

I discovered this through information provided to me by a mother who also lost two sons to cot death following vaccines and whose children were in the research on which these various studies have been based. She was disturbed by this 'new' research and wrote to all of the authors of the original Carpenter paper and the more recent Bacon and Hey paper. Only Dr Bacon had the decency to reply. She also wrote to the Times Online.

Her lengthy, detailed and highly important contribution was not published.

She sent her letter to me and I am re-producing it below as it raises issues of enormous concern, not least the fact that ranks close in and parents are refused information about their children even though careers have been built on the data .

Dear Sir,

I write in response to Nigel Hawkes article in Times online

Cot Death Suspicions are revived

I am a mother who had 2 SIDS deaths many years ago and am shocked at this paper by Hey and Bacon as it leaves out far too much information to reach the position it reaches in its rather clumsy attempt to (yet again) blame mothers and exonerate medics. Perhaps I can help with some of the information that has been omitted. Perhaps the public might then start asking questions about this research.

I became aware many years after my children’s deaths that data in relation to them had been used in published research. I was taken aback by this as I had not been informed of their inclusion nor had the authors of these ‘papers’ sought permission from myself for their inclusion.

‘Data’ in relation to my children was apparently used in the original Emery paper.

This paper was revisited by Carpenter et al in 2005 – and discussed by Gornall.

Hey and Bacon’s recent paper is again a revisiting of Carpenter et al and the original paper.

I set about trying to discover exactly what apparent data in relation to my children had been used in these papers.

Initially I tried ‘locally’ to obtain records in relation to my children; I then discovered that records in relation to my children ‘could not be found’.

These included GP, Health Visitor, Clinic, Midwifery and Birth, Vaccination, Hospital admission, Outpatient and Ambulance records.

With regard to Post Mortem records, all that was available was a brief 2 page Official Coroners Record for each child, which gave scant details and a cause of death as SIDS for both children. I knew that there had to be a Post Mortem File in relation to each child which obviously contained specific details of my children’s Post Mortems i.e. tests carried out, date and time of PM, samples taken etc.

It later was confirmed that my children’s Post Mortem Files ‘could also not be found’.

There were 40+ SIDS deaths in my city area (including my own children) these 40+ deaths occurred within a total of 2 years. For a population of approx 250.000 this appeared to be a high incidence. In fact this is documented by a GP as being ‘a significant blip’.

I discovered that all 40+ SIDS victims Post Mortem Files apparently also ‘could not be found’. It was clear that Post Mortem samples and organs were retained from many of these SIDS victims (including my own). Though why this happened, what was being tested for and the results of these tests apparently ‘were not available’ or ‘could not be found’.

Given the ‘research’ being carried out in my area by SIDS researchers I find it impossible to believe records in relation to 40+ children apparently have simply ‘disappeared’.

My second child was enrolled pre birth in Care Of the Next Infant Programme.

I reasoned that as my children had apparently been included in Emery’s original paper and others, it was reasonable to assume that CONI and or the authors of these papers had access to the missing records in relation to my children.

To have apparently included my children in these papers without this data would be professional suicide and would mean the criticisms levied against these papers had great merit and warranted investigation.

This would also mean that Hey and Bacon’s recent paper could be open to the same criticism.

CONI researchers released to me the daily ‘tick’ charts (filled out by myself and my children’s father), they also released to me daily weight charts (again filled out by myself and my child’s father) and weekly Health Visitor Contact sheets along with a few other telephone and contact records.

I knew that to have apparently included my children in ‘research and these published papers’ the authors of these papers needed to have had more detailed information in relation to my children that that which was released.

However I was told in no uncertain terms that these were the only records held. I am astounded.

There was a clear protocol for a ‘death on CONI scheme’, (As outlined by Emery and others)

The original paper states:

We studied all deaths in 6373 infants who had completed the CONI programme by December, 1999. After a CONI death, we made detailed enquiries into the previous death and the CONI death, including a family interview, a review of autopsies, and case discussion.

My children died pre 1999 and so by default would have been included in this paper.

However those that released the few papers detailed above deny any involvement after my son’s death, they and the authors of these papers refuse to answer specific questions in relation to my children’s inclusion in these papers.

Those that released these scant records to me deny that any information in relation to my children’s deaths was obtained.

I find this hard to believe especially has I have already said that Emery had stated in ‘other papers’ that my children died from probable inborn metabolic disorder and or familial cause. How could he reach these conclusions WITHOUT these records?

Though the people that released these scant records deny obtaining any post mortem records or information in relation to my children, in the papers released to me by them there was one page of the Official Coroners record, this could only have been obtained either from the Pathologist or the Coroner, which tells me that CONI did indeed request/obtain records in relation to my children.

We were visited at home by one of the authors of these papers pre my son’s birth and post his death. (As per the protocol for birth and death on scheme.) Recruitment of my child’s GP, Health Visitor and Paediatricians was secured by this person in relation to co operation and participation in their research. (As per their own protocol).

If no records were obtained re my children’s deaths, then why the visit to us as per their own protocol, why the recruitment of the GP, Health Visitor and Paediatricians? Any data gathered would be useless as research, WITHOUT complete records in relation to my children’s lives and deaths. So far the person who visited has declined to answer.

John Emery, sadly now deceased, contacted the Pathologist on the day of my son’s Post Mortem. (Though researchers at CONI deny this contact took place, I have the evidence to show this contact did indeed take place)

If it is true that CONI/Emery did not contact the pathologist and that records were NOT collected in relation to my children, then my children’s apparent inclusion in these papers means that these papers are worthless as research, they are based on incomplete data, their own ‘protocols’ for a death on scheme were not followed and it also means that they could not possibly have reached the conclusions they did based on ‘evidence’.

I say it would also mean the revisiting of these papers by Carpenter et al and Bacon and Hey is based upon flawed data.

One has to ask how many other children’s data used in these papers is incomplete.

If they did indeed have this data in relation to my children, then this means that the authors of these papers are withholding this data from the parents of the children they have ‘researched’. Data that parents have a right to have, worse still, it maybe that this data may aid some parents in legal proceedings and that gross miscarriages of justice may have occurred. Data they are withholding.

As a parent this data is apparently not available locally in relation to my own children. Therefore it is reasonable to assume that there may be parents involved in legal proceedings whose records in relation to their children have also ‘gone missing’. These parents, like my self previously, may not be aware that this data is apparently held or at least accessible by the authors of these papers. I certainly would not have been aware of my children’s apparent inclusion in published papers if I had not set about this path in recent years. The authors of these papers certainly do not volunteer this information to parents.

As I have said if the authors of these papers did not have this data in relation to my children and included them in research papers without this data, then these papers are worthless as research and deserve the criticisms levied against them. If Bacon and Hey also used incomplete data then they too will deserve such criticisms.

They CANNOT have it both ways.

I have contacted the authors of these papers in recent months and put it to them that to have apparently included my children in these papers, the authors must have been in possession of the entire records in relation to my children. I put it to them that to have apparently included my children in these papers based on the scant records released by CONI would have been professional suicide.

I have asked the authors of these papers to confirm or deny that my children were included in any of these papers, to date they have not even acknowledged my request. I have been stone walled by these ‘authors’.

I also put it them that in relation to my own children ‘they made detailed enquiries into the previous death and the CONI death, including a family interview, a review of autopsies, and case discussions took place’. I put it too them that I could not believe that their own protocols were not followed in relation to my own child’s death. A family interview did indeed take place pre and post my child’s death. Was I really expected to believe that a review of autopsy, detailed enquiries and case discussions did not take place? I think not.

I asked the authors of these papers what form the detailed enquries into my children’s lives and deaths took, were records and samples obtained? I asked if a review of my own children’s autopsies had taken place and what this entailed, I asked if a case discussion had taken place in relation to my own children and what data was used in these ‘discussions’. I asked the authors of these papers to release to me any and all data that they had used in preparation of these papers in accordance with their own protocols, relating to my own children…….. 2 months later I am still awaiting a response.

Certain quarters have actually told me that they now refuse to acknowledge or answer my questions, concerns or requests.

The point is that the authors of these papers CANNOT have it both ways. They either have these records or they don’t.

They either based these papers on complete data or they didn’t.

They included my children or they didn’t.

I say that these papers are not open to scrutiny by the very parents of the children they include.

With regards to Professor Meadow being right or wrong, I have evidence to show that in my area the SIDS rate was relatively high, especially amongst the Royal Naval Community. In at least 3 military married quarter estates there were a higher percentage of SIDS deaths then amongst the civilian population. In one area alone there were over 6 SIDS deaths in just over 18 months.

I am in possession of a letter from a Pathologist which states:
These multiple SIDS cases are very worrying. We have had several down here of three’s and fours and despite every care it seems impossible to do anything about it. All of the investigations seem to turn out negative and we even had one who was admitted to hospital because the parents were thought to be responsible and the baby died suddenly in the ward.

My city was one of 10 areas that was aiding and assisting SIDs researchers. It is clear that some of the authors of these papers were actively involved in research in my own area at the time of my children’s deaths in fact at the time of all 40+ SIDS deaths. Is it coincidence that the post mortem files in relation to these children ‘cannot be found’?

It is also clear that parental involvement within the deaths in my own area was foremost in the minds of all professionals involved. I have data that shows that parental involvement in these deaths was investigated and signs and symptoms of abuse actively sought.

In 2 years in one city it is clear that there were other families that had suffered 2 SIDS deaths. (This is confirmed by ‘other sources’) Families that had little or no connection with each other and families that lived in separate parts of the city. The only real connection between them being that the majority of deaths were amongst the military community.

To say that the chance of 2 SIDs deaths is rare is disproved by events in my own city.

With regards to Ms Blakemore Brown’s response:

My own child died within 36 hours of having his vaccines. My first child died approx 2 weeks after vaccines. I know of one other family (in my own city) whose child died within 24 hours of having vaccines. The parents were convinced that their child died as a result of the vaccines and actually told the pathologist when he gave the cause of death as SIDS that they thought there had been a ‘cover up’.

I have recently had released to me vaccination records for my children, (records that have taken over 5+ years to get released, records whose very existence was denied 5+ years ago) these say that I gave permission for my child to have his vaccines 2 weeks after he died! Why would I give permission for a dead child to have vaccines? There are other worrying discrepancies.

I find it interesting that the majority of deaths within my own area occurred on or around the time of vaccines being due. I understand that one ‘batch’ of these vaccines would have been enough to vaccinate the children of my own city. Was this a ‘hot’ lot?

Maybe the authors of these papers need to look at these issues; I would be interested to know why the subject of vaccine involvement in SIDS is completely ignored in these papers.

What is clear is that the authors of these papers do not take kindly to parents asking questions re their children’s data. Preferring to completely ignore parental requests, concerns and questions. I have been effectively stone walled by these authors. Why is that I have to ask?

Surely if the system is now, yet again, being encouraged to think of mothers as murderers, the authors of these papers cannot be selective in their reporting nor can theses authors base their reporting on incomplete data. Mothers like me, who have lost babies, fully welcome any discussions and research into the causes of their deaths but please don’t demonise and patronise us. We just need the truth.

Many thanks
A mum

I would like to make an addition to my response:

Carpenter said in his 2005 paper:
Repeat sudden unexpected and unexplained infant deaths: natural or unnatural

We studied all deaths in 6373 infants who had completed the CONI programme by December 1999

Carpenter clarifies this further in this paper:
The Care of Next Infant (CONI) scheme, which started in
1988, was available in 75% of health districts in England,
Wales, and Northern Ireland by 1994 and is currently
available in 91%.

My second child was enrolled in this programme pre birth pre 1988. 1 other surviving child was enrolled pre 1988. This 'programme' was certainly up and running pre 1988. The name of the programme changed over time.

It seems that the Carpenter et al paper also cannot be taken seriously, setting aside my earlier concerns above, Carpenter et al have apparently only included babies since 1988, when Emery’s original paper apparently included babies that had died much earlier (including my own). If this is supposed to be a serious reworking of Emery’s original paper then Carpenter et al cannot be selective in what they leave out. Omitting whole years of data calls into question the credibility of this paper.

Emery said in his 1993 paper:
Acta Paediatr. 1993 Oct;82(10):873-6. Links
Recurrence of unexpected infant death.
Wolkind S, Taylor EM, Waite AJ, Dalton M, Emery JL.
Maudsley Hospital, London, UK.
Families which had experienced two or more unexpected infant deaths were the subject of detailed confidential enquiries, including necropsy examination. Cases were derived from two main sources: first, deaths occurring during a nationwide programme of support for families with a subsequent baby (8 families) plus 2 families from a series of confidential enquiries in Sheffield, and second, direct referrals from paediatricians (17 families). Fifty-seven deaths were studied. Twenty-four families had experienced 2 and three had experienced 3 deaths; 11 deaths (19%) were found to be adequately explained by history or post-mortem findings; 7 (12%) were probably accidental; 31 (55%) were most probably due to an action by one of the parents (filicide); only 5 (9%) were considered to be true or idiopathic sudden infant death syndrome; in 3 (5%) cases there was insufficient information to draw a conclusion. Five (18%) of the families lived in circumstances of serious social deprivation. A history of psychiatric illness was present in one or both parents in 18 (67%) of the families.

I say that Emery included my children in this paper.

However if he did not then why not? If this is the case then these papers are indeed selective in the children they represent.

I cannot get the authors of these papers to confirm of deny that data from my children was used in ANY of these papers, they refuse to answer and prefer silence.

A simple confirmation or denial as to my children’s inclusion and their data by these authors would be nice; surely I am allowed to know what research my children were involved in?

Or is it that I have them between a rock and a hard place? To say that they did seek detailed data from my children would mean that I have been lied to (and can prove it), it would mean that data has been withheld from me and it would also mean that permission was NOT sought from myself to seek and include this data which would open these ‘authors’ up to litigation. Or,

If they didn’t seek this information then this opens up these papers to legitimate criticism.

As a further addendum:

I emailed Dr Bacon:

This is his response:Dear XXXXXXX Thank you for your email. What you've told me is most distressing, and I should certainly like to help you if I could. However I'm afraid I'm not in a position myself to provide the information you seek. In preparing our paper Dr Hey and I used only the information given in the report by Professor Carpenter. We didn't know the identity of any of the cases, and we didn't see any other medical records or notes. Professor Carpenter states that his team studied all the available information about each case, but I don't know whether this always included the medical records. He or XXXXXX, who was in the team, could best advise you on this. In the 1980s, when cases were used in research, copies of the medical records were sometimes made for the researchers, while the originals stayed in the hospital where the patient was treated. Or sometimes the original notes were loaned out to the researchers on the understanding that they'd be returned later. Parents are now entitled to see the hospital medical records (which would normally include any post-mortem reports) of their children unless it's considered against the children's interest. You've probablyalready approached the hospital where your babies were taken when they died, but if you haven't, that's certainly worth trying. There may be a problem if the records have gone astray or have been routinely destroyed after a certain period. I don't know when you were last in contact with XXXXX, who coordinates the CONI programme. Most parents find her very helpful, and I'm sending her a copy of our email correspondence so that she can advise you if you decide to approach her again. I hope that this is some help, and that you'll be able to find some respite from the distress you've had for so many years. Yours sincerely, Christopher Bacon I would like to thank Dr Bacon for his response; he is the only one that has responded. However it is clear that Dr Bacon was not in possession of the records in relation to these children he simply based his ‘report’ on the Carpenter paper. The question has to be asked, what ‘data’ did Carpenter et al base their ‘paper’ upon? Given the ‘evidence’ I have gathered it seems that Carpenter et al based their ‘paper’ on incomplete data? I have approached XXXXX at CONI, however I am told NOT to contact her again and only contact her ‘Risk Management Officer’. Her ‘Risk Management Officer’ refuses to acknowledge my requests let alone respond to them. Why this heavy handed treatment when all I ask is reasonable legitimate questions in relation to my children, surely I have a right to know? I have approached Prof Carpenter and the co authors of the paper, 2+ months later I am still awaiting an acknowledgement, let alone a response. What is clear is that the ‘authors’ of these papers do not like parents asking questions about their children’s ‘data’ and its inclusion in ‘research’. I am treated appallingly by the very people who profess to care for parents like myself, why? …….Because I am asking difficult questions.