FSIDS Speech
I am Anne Diamond, and I am very pleased to tell you that this year is a very special year both for me personally and for the Foundation. It is 40 years since the Foundation started its pioneering and desperately important work, funding research into cot death and educating a largely ignorant public about this devastating syndrome. But this year is also the twentieth anniversary of the Back To Sleep campaign and the death of my own child from Sudden Infant Death Syndrome – and so it seems fitting, and very poignant, that the Foundation has asked me, and I have agreed, to become the Foundation’s Anniversary Patron – so that, united, we can go on fighting cot death and hopefully find new strategies for dealing with it – hence what I hope will be a meaningful, positive, useful and consequential conference today.
The Foundation’s story starts with a grandmother who simply couldn’t bear the anguish of having to deal with her grandchild’s death with so many questions unanswered, a medical fraternity which just didn’t know much about it and a society which appeared not to care – or at least to wish to sweep the whole unpleasant business under the carpet. She was a formidable old thing – Mrs John Hunter Gray, granny to a little baby, Martin, who died inexplicably at just under a year of age, and she instinctively knew that if we could try and find out more about cot death, we just might learn how to prevent it.
Back then, in 1971, parents who’d just discovered their baby dead were often – usually – treated with suspicion and almost immediately became the focus of rumour, gossip and ignorant supposition. Perhaps they’d never really wanted that baby, maybe the mother was post-natally depressed and something had got out of hand, she didn’t breast feed, she didn’t care.
Even eminent doctors, supposedly caring professionals let it be known that they considered cot death a totally made-up phenomenon. Only very gradually, and largely due to the work of the Foundation and some other, smaller, local cot death support groups and charities, did society, the medical establishment, the police and the judiciary come to accept that this tragedy existed, and in growing numbers.
Thankfully, by the time it happened to me, the world had largely woken up to the idea that cot death happened, to caring, loving parents. And I was treated with compassion. This is the family picture that sums up the dreadful poignancy of that day, 20 years ago.
It was my eldest son, Oliver’s, fourth birthday. He shouldn’t have been a solitary little figure wearing a policeman’s helmet that day. He should have been surrounded by his little friends, blowing out the candles on his cake, wearing a paper crown.
Instead, just after I’d been in his bedroom to wake him up, singing Happy Birthday, I’d popped into the baby’s nursery, to check on four month old Sebastian – and our lives changed in the time it took to absorb the awful truth, to scream for help, to dissolve in bewildered shock and tears.
In a day which saw our front door besieged by press and paparazzi, our first visitor was a young policeman answering our 999 call.
He came upstairs to the nursery where I was cradling the stiff cold body of my precious baby, and he touched my shoulder with a caring hand.
“I am so sorry,” he whispered. “I know how you feel. The same thing happened to me…”
Downstairs, the rest of my family was gathering in utter shock, in the kitchen, making endless cups of tea that no-one drank. My husband rang around all of the families who were due to bring four year olds to the birthday party. He had to explain, over and over again, just why the party had been called off.
Oliver, and his two year old brother Jamie, crouched in a corner, aware that they weren’t the focus of attention right now. The kind policeman thought his helmet might help – and Oli wore it for the rest of the day. Perhaps it gave him some sense of security.
At the time, cot death, or Sudden Infant Death Syndrome, was killing 2,500 babies a year – that’s about four or five a day. So, as we were living through the worst of all nightmares, this dreadful scene was possibly being played out that day in four or five other households. And the next day, as we struggled to accept what was happening to us, and the next, and the next, and the next. And even on the day we had the funeral, a despite our personal pleas, the press still sent photographers and made it all front page news If there was one good thing about the sensational press coverage – it was to raise awareness of the syndrome, as the papers in their bid to justify the invasion of privacy, called for more money for more research.
In the end, my quest to try and find the answer to cot death, took me all the way to New Zealand, which had the highest cot death rate in the world. Everyone in New Zealand had either had a cot death themselves or knew someone who had. There, while I was filming, another baby in the same city died of cot death, and I spent the morning with the young bereaved mother in her Maori home. There, the dead baby stays with the family for three days while the family mourns around it. They believe that the baby’s spirit is still with them, before finally moving on.
What the experts were finding in New Zealand, they were also finding here at home. And, thanks to my high profile, I was able eventually, to help disseminate that vital information. That sleeping position was key. That many babies were being over heated, over wrapped. That it was really dangerous, given modern parents propensity for drinking and smoking, to sleep in the same bed as your baby, even to fall asleep with them on the sofa in front of the telly - and that you really shouldn't smoke anywhere near your baby. The science and statistics linking smoking with cot death was actually stronger than the science linking smoking and lung cancer. The advice worked and the cot death rate fell, thank God. The Back To Sleep campaign is still the single most successful health campaign there's ever been in this country. But still we have too many babies dying - and there's so much more we could be doing to prevent those deaths and help the families who are affected. We need to identify those most at risk, and target help to them. Perhaps different agencies and voluntary bodies can work more closely together to increase the efficiency of the message, and reduce infant mortality. That's what today is all about, and why I am very pleased to be here. There's really nothing worse than losing a beloved child, as too many people here know too well. One thing I really have noticed over the years in those similarly bereaved to me, is the burning desire to stop it happening to anyone else. There's a tribe in Africa which says " the only way to end grief is to save a life." That's why so many grief-stricken parents become fierce and feisty campaigners. I reckon it's also because your time campaigning is time you're spending with that child. So thanks very much for greeting me here today, but I'm happy to do it, because it is time spent with my son. There he is, with his brothers Oliver and James. Oli's now 23 and living in London, pursuing a career in politics. James is off on a Gap Year expedition to clear jungle land in Belize in a couple of weeks time. I must add that I went on to have two more sons, Jake and Conor, with the help and support of the Foundation's invaluable Care Of The Next Infant scheme. They're doing well too! |
