i been lookin in my facebook groups cos its been a long time since i gave any this shit a thought, but i will post here something that was written in the group.
me and two others became very involved in the toxic gas with eails back and forth to the dr himself and the woman that helps him promte it in the uk. it became a major fall out when the three of us reaslised how cult like it was.....
Three of us was 'invited' to be admin on Julie’s group Cot Life, some months back. In that time, we raised the profile of the campaign, invited 1000’s of people to join the group and we got 1000's of signatures on Julie’s petition. We used our own time and money to hold an awareness day in which we had t-shirts with the cot life web address on, the petition address and a picture of Kelly’s son who has in the last few months died of cot death. We made the public aware of the mattress wrapping and got more signatures on the petition. This awareness day was covered by the local media thanks to Kelly. Julie did not attend.
I also emailed the national media (newspapers, TV programmes, radios) asking they look into the toxic gas theory, hoping that someone would pick up on it and help us in our campaign. No one was interested.
We were banned from FSID facebook as we were supporting and fighting Julies/Sprotts’ cause, believing that they should include mattress wrapping in the reduce the risk advice.
I spent every waking hour focusing on this campaign, to the point my daughter and unborn child were being neglected. Julie knew this.
Cot Life claims that there is ONE cause of cot death and ONE prevention. I do not dispute his theory and I sleep my daughter on a wrapped mattress. In fact as you can see above, I did everything to support the campaign, but I also followed all advice available from other organisations. My aim was to bring the toxic gas theory to the public’s attention, not influence people into believing one thing. I was never biased. I feel the organisations should work together, let all reduce the risk methods be heard and allow parents to make their own choices. I always made this clear to Julie, FSID and the public.
Here is the reason we created our group: Giving you a choice.
I had previously asked parents that were writing off mattress wrapping, their reason for doing so. Their reasons were, my baby died in my arms, in my bed, on the sofa etc. This response and also a dream I had led me to send a message via a thread (I still have ALL the messages), to Julie, Kelly, Lora, two other admin that Julie had just appointed and Leanne who was new to the group but was already doing what she could to bring attention to the campaign.
I expressed how I was concerned that parents were writing off the theory as they assumed it was only cot mattresses that exposed babies to toxic gases. I suggested that we change the wording slightly on the Cot Life Campaign group, so that the message was clear: The cause of cot death (I say that if we are assuming the toxic gas theory is correct) is due to toxic gases in the babies’ environment, advise parents of the mattress covers for cots and include advice on how to reduce the risk of babies being exposed elsewhere in their environment. I added that covers were not sold for blankest, pushchairs, car seats, sofas, adult beds which could all potentially give off these gases.
I stated that I would feel responsible if we continued to let parents believe their babies would be safe if they purchased a mattress cover only for their baby to die on a sofa. I added I wanted to protect all babies, not just ones sleeping soundly in their cots with a mattress cover.
FSID have recently reported that 54% of babies who had died of cot death were NOT in their cots. Four of the seven members in the message thread I sent, had babies die to cot deaths and they were not in their cots.
I stated that the wording of the petition was promoting mattress wrapping only. ‘We the undersigned petition the Prime Minister to let parents know about mattress wrapping for cot death prevention and The Cause of cot death has been discovered and something simple can be done to prevent it.' This something simple is the mattress covers.
I believe the sensible thing would have been to petition the government to tell parents about The Toxic Gas Theory????
All other admin agreed that our statement by means of the petition, the wording on the Cot Life wall and replies in response to parent’s queries were confusing and not clear.
Part of my suggestion (which was after having a dream) was also to hold a big event where we can raise awareness on all reduce the risk factors. My idea was to have different areas of advice at this event. Mattress wrapping, breathing monitors, FSID advice, advice for pre term babies, First Aid advice.
This was parts of Julies reply:
“people who are against it, are people who are writing off the toxic gases in 'mattresses' - fsid and mark are not worth worrying about - the only way people will benefit is knowing about the mattress wrapping - and there are plenty of parents out there to convince, and as you say getting out there and letting the public know is the way forward - not just internet - if group members are not coming forward, we should perhaps leave them to themselves and do a lot of planning in private - it will make people curious as to what we are doing, and may provoke more questions and campaigners coming forward”
A few things concerned me here:
Julie admits that they are writing off the toxic gases in ‘mattresses.’
The reason it they assume we are referring to cot mattresses when we promote mattress wrapping as they are only made for cots. This was my main point. Cot mattresses are not the cause of cot death - the toxic gases are.
When I spoke of FSID, I stated I had seen many parents’ comments on their site writing off mattress wrapping and Mark was just one example of someone who made a comment on Cot Life wall. To say these bereaved parents are not worth worrying about is a disgrace.
Parents who would have their babies in a cot 24/7 with a wrapped mattress would be the ‘only’ ones to benefit from this, surely?
'There are plenty of parents out there to convince. Leave them to themselves. Planning in private.'
In my opinion, this to me does not seem like a campaign purely wanting to protect babies. It sounds to me like a brainwashing cult.
My message started off very motivated with lots of ideas and suggestions but for some reason which we still do not know, resulted in all admin and some other members of Cot Life waking up the next morning to find we were banned from Cot Life and with no explanation.
Then later Julie came back with this (in no particular order):
“You want to change the wording on the group and the petition - that cannot be done - if you made a petition about toxic gassing it will be answered with the limerick report - which states of course that gassing does not happen and cannot be found and cannot harm babies - so mattress wrapping would go un-noticed and then nobody would get to hear about it - it is proved throughout history that off gassing happens - so a petition to tell people this would not work - it's so important parents know about mattress wrapping, then their babies will be safe - and I am not for changing the wording on the group”
“I know you will start your own group - and I can only wish you luck with this - I don't see it as I am stopping you from talking about cot death and cot death prevention - and I know you want to discuss all aspects - but, the negativity on the group is what people, who are just visiting it can see right away... and as you say the group is no good any way - and I feel it is only fair that we continue with pointing out the mattress wrapping on here - as this is what this campaign is all about - it is not ignoring the other questions on cot life, it answers them and helps parents understand why it is important to wrap”
“And I know that this year, Kelly and Amber and others have done so much to do the same thing - and that you will go on doing well, as it is also in your hearts to protect babies from this tragedy”
“You are all amazing with what you are doing to raise awareness, I truthfully can't stop from crying when I see how brave Kelly has been, and the awareness raised is terrific"
“I hope you all decide to be on this group - and carry on supporting cot life, but that is your choice - it makes me feel awkward that most of you don't speak to me, and there is so much stress and bad feeling, even though this is understandable. I have never spoken with any of you on the phone and obviously it is difficult communication online like this - but, the campaign needs to be dealt with in a professional manner - there has already been enough slander and ignorance about this campaign - and it is being watched all the time - and read by more members than there are on the group”
“I think you are all wonderful people - and if you decide to remain angry with me, and decide not to come back to the group - then, I wouldn't blame you all - and only wish you well in all that you do - but, I hope you come back and finish this off - you lot can do this - it will take more time and a lot of thinking - that group is an audience, any group is - they don't say much, need cajoling, we are on the centre stage - we have to make an impression, coax people over - one by one if needs be - little by little - get them talking in uni's - in work - get a huge force together... you know all this and I digress - sorry for upsetting everyone - I really am sorry from my heart - I hope we can all talk and sort this out - don't let all our pain shield our camaraderie - let's get this all right”
This was my response:
“I'm so sorry everyone. I truly am. All of this is so not what I wanted. I had a dream and look where it got us.
Please let’s not fall out. Let’s not be against each other. If we chose to go our separate ways, lets part as friends. At the end of the day, we all want the same thing don't we -to protect babies and we can all help each other.
This is heartbreaking and I just want you all to know I am sorry for abusive language and being aggressive. This is not what I'm about.
Julie, from what you have told me about your efforts in the last 15 years, yes you deserve a rest, but I don't want to take over the group and have never wanted that (Julie said I could take over Cot Life). I told you from day one I supported the theory but felt other measures should be in place with regards to advice, such as first aid training for parents and breathing monitors. I did not want to put all my eggs in one basket. I was still supporting the toxic gas theory and your campaign. I still support the theory but can no longer be involved with the campaign itself or this group.
Please everyone, let’s end this with kind words and leave on good terms. Anyone wanting to stick with this campaign, you should do so and forget all the mess above.
Amber”
(Please note: I no longer wanted to be involved in the discussion and had requested that I be removed from the thread but the messages still kept coming which resulted in me using negative language – I was very upset at this point)
Julie then came onto ‘our’ group and added to the discussion of Lora’s son Luke, with her post ending “could you please stop talking about me on your group and slandering me.”
There was no mention of her name on our group until, she came on it.
Julie also private messaged her post to me, Kelly and Leanne as well as Lora. I replied stating that Luke had nothing to do with me and to speak to Lora. I also asked her in other terms to stop messaging me or I would report her for harassment.
I (just me, no other admin on our group)recently received an email from Dr Sprott, threatening me with legal action in court if necessary. You can see this on the discussion board.
He claims we are a campaign and he will denounce us in the whole of Britain. He has no doubt that the British media would take him seriously. Really? I have spent the last few months fighting to get the media interested in his campaign, but no one took him seriously then, referring me to The Limerick Report. Have you read this by the way?
He also touches on the t-shirts we used with his web address on. We bought these with our own pennies, and wore them in the freezing cold, in Worthing town centre, raising awareness for HIS campaign and getting signatures on JULIE’s petition - all this whilst being admin on the Cot Life group. I very much doubt that Julie has mentioned any of our hard work to him. I imagine he has been told, we are a campaign against him and his theory and we are using his intellectual property by going round wearing t-shirts with his website address on to discredit his theory.
The fact is we are four mothers, 3 bereaved (2 very recent), 2 pregnant. We were very much involved in his campaign and were assets to him which probably resulted in the sale of many mattress covers. But because we had ideas and a different opinion to Julie, his number one UK campaigner, we were banned from the group and all our hard work was deleted.
We felt we could do more for parents and did not want to focus on promoting mattress wrapping so set up our own group. It’s not a campaign. We still supported HIS campaign on the group until Julie brought her biased and negative thoughts to it and we have had to remove all mention of him and his intellectual property. So not only has she again ruined something good for us, she has ruined it for herself, Dr Sprott, the Cot Life Campaign and members of our group.
I am actually relieved to be rid of Cot Life as I felt it was very negative and it brought me nothing but abuse, stress and debates. I was pleased to be setting up our own group. We made it clear from the start that we wanted it to be a positive group which covers all aspects of cot death and we were not to be biased regardless of our own personal opinions on advice to reduce the risk. We want people to feel they can share their personal experiences, without being judged. We welcome honest opinions on the topics under the discussion board, with the assurance that posts would not be deleted or themselves will not be banned from the group.
I have stayed out of any public dispute on this matter but I am upset by the comments about Julie on our group (Giving you a choice). This group is not about Julie. The admin agreed after receiving Sprotts email that we were not going to discuss Dr Sprott, his book or his theory. We no longer wanted to be associated with him or Julie.
A comment made on the group: Giving you a choice - protecting all babies.
‘You say you want to give us a choice and discuss all aspects of cot death, but why are you persecuting Julie when she spends so much time trying to prevent cot death, I cannot believe some of the things you are all saying about her on your other group.’
We do give people a choice. Read our many topics. If you feel we have left something out, please let us know.
Why are we persecuting Julie? We are not. This group is nothing to do with Julie. You even say ‘on the other group’. I suggest you take this post to the ‘other group’ that you speak of.
We did not want any mention of them on our group but an admin member felt it was wrong that her freedom of speech was being taken away and she had every reason to be angry about this. She wanted to discuss how unfairly she were treated but as she respected my feelings on the matter, she took her thoughts elsewhere and set up her own group, which is not linked to ‘giving you a choice.’ I would like to add she only lost her son in September. She was deeply distressed that she was invited to the Cot Life group, with an open mind, only to be banned for having an opinion. I think she has every right to express how she is feeling. Don’t you?
Julie is spending her time trying to prevent cot death. What do you think it’s about for us? We have reason to be passionate about wanting to help babies. We are parents, some bereaved, wanting to protect babies the best we can. Please don’t forget that.
Many thanks
P.S We now know that Julie goes by the name of Julee Oakley, Julie Harris and even Nanny Oakley. We also now know she sells mattress covers. Since being banned and creating our own group, Julie has done what I suggested and changed the wording on the Cot Life group.
All I can find are summaries, and from those, I'm not convinced against the toxic gas theory either - they seemed to focus only on antimony, neglecting the other two substances in the toxic gas hypothesis, they say some things that agree with the theory (the death rate dropping when PVC covered mattresses started being used and when the chemicals were taken out of PVC), and all there are in the summaries are statements without any hint even of how they came to those conclusions. If I could read the research myself, I could probably trust it and put this hypothesis out of my head. I may make a trip back to my alma mater and see if I can find some of the medical journals referrenced.
This is why they actually recommend pacifiers.....they keep these babies from getting into a very deep sleep and tend to wake easier if needed.
That's a little drastic. And not the nicest way to treat grieving parents.
