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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES Programme no. 3 - Cot Death
RADIO 4
TX DATE: TUESDAY 14TH JANUARY 2009 2100-2130
PRESENTER: MARK PORTER
REPORTER: LESLEY HILTON
CONTRIBUTORS: PETER FLEMING
LINDSAY MCDERMOTT
JILL RYDER
EDUARDO MOYA
SOPHIE BISSMIRE
NEIL SABIRE
PRODUCER: PAULA MCGRATH
NOT CHECKED AS BROADCAST
PORTER
Six babies die unexpectedly every week in the UK as a result of cot death - or sudden infant death syndrome. Deaths that doctors struggle to explain. It's too high a toll, but one that has been slashed in recent years. And most of the headway resulted from the pioneering work of paediatrician Professor Peter Fleming and his team at the University of Bristol and The Bristol Children's and St Michael's Hospitals. But initial progress was frustratingly slow.
FLEMING
When I first started in this field was in the mid to late '70s when we recognised that there was a group of infant deaths that we really couldn't understand, we couldn't explain. The late '60s, 1969, there'd been an international conference and an agreement to define the condition of sudden infant death syndrome. By the late '70s we were recognising that whilst most causes of infant deaths were falling quite rapidly this group was stubbornly staying there and indeed was possibly rising. A number of American investigators had become one might say almost obsessed by the idea that because babies paused in their breathing sometimes that there might be a way of looking at those patterns of breathing pauses and predicting which babies were at risk of sudden - suddenly dying. Now that observation led to probably about 15 years of almost entirely fruitless investigation at huge expense in North America with this obsession with breathing patterns of babies and looking for patterns of cessation which might predict babies dying - none of it came to anything.
PORTER
How big a problem was it here in the UK and how did we compare, at that stage, to other countries in the world?
FLEMING
In the late '70s to early and mid '80s somewhere between 1500 and 2,000 babies a year on best estimates were dying in this way, suddenly and unexpectedly with no clear explanation being found. And there was some evidence that during the course of the 1980s that number might have been going up.
PORTER
And the babies most at risk in terms of age were how old?
FLEMING
So this was babies typically between about six weeks and four months, boys were slightly at higher risk than girls, the risk was higher in families living in more socially deprived circumstances and for families where the mother was younger. Those observations had been made in the 1950s and '60s and seemed to still hold very true in the 1980s.
PORTER
And the typical story of the presentation would be what?
FLEMING
The typical story would be that a baby was apparently well or maybe mildly unwell, perhaps a snuffle or a cold, put to bed in the normal way on an evening or at night time and found the next morning in the same position they'd been put down - very still and dead. The striking sort of statement the mothers would say was I went in there and the moment I turned him over I knew he was dead. Now that piece of information was giving us one of the most important answers and we heard it a thousand times before we recognised what was important. It was actually that she turned him over and a large proportion of the babies who died were dying on their tummies.
NEWS CLIP
The government is launching a 拢2 million advertising campaign to try to reduce cot deaths. Fourteen hundred babies die in their cots every year and the government has been criticised for failing to act on research which could help reduce that number by up to 25%.
FLEMING
And that simple recommendation of not putting babies on their tummy had an absolutely enormous effect - an 80% reduction in the numbers of unexpected infant deaths in the UK and similar falls in every other country where that simple practice of the Back to Sleep campaign - putting babies to sleep on the back - was implemented.
We also know that there are many other factors that are important. Exposure to tobacco smoke - mums smoking during pregnancy and babies being exposed to tobacco smoke after birth, very, very powerful effect, surprisingly strong in fact and we found in a study in the '90s in the UK that for every hour of the day that a baby spent in an environment in which smoking was permitted the risk of cot death went up 100%. So it was a 100% increase in risk per hour of daily exposure which is a staggeringly high effect. And recognition of that and trying to produce smoke free zones, trying to make sure that nobody smoked in the environment of babies seems to have also had quite a big impact.
We've also learned about the risks of babies sleeping in settings where their covers can slip over their head because of the importance of temperature and the effect when the head's covered babies can get very hot. And again using bedding in a way that prevents that happening, either using baby sleeping bags or putting the baby in the feet to foot position at the bottom of the cot so they can't slip under their covers those seem to have had quite important effects. Interesting, I've spent some of my time working in Africa and some of the African families have said to me that they viewed the British as child haters because the idea of putting a baby in its own bedroom or separate from the family at an early age to an African mind is tantamount to child abuse. And actually there's a huge amount of sense in keeping the baby in close contact and in close environment of its primary carer. We've recently showed that that had a protective effect, not just at night time but even more strongly in the day time.
PORTER
And that's presumably because mothers are in a position to monitor the baby and if she notices anything awry she'll investigate.
FLEMING
Absolutely. Parents are very, very attuned to the needs of their babies, particularly mothers. And so having the baby in close and continual contact with the primary care giver just means that that mother can constantly monitor, constantly make minor adjustments to the needs of the baby and respond if there's any signs of the baby becoming unwell.
PORTER
Professor Peter Fleming. Well Lindsay McDermott has done all the right things with her baby daughter but now she has decided it's time for six month old Freya to move into her own room. Lesley Hilton went along to meet them.
ACTUALITY
MCDERMOTT
What are we going to do this afternoon? Are we going to go and see granny? Yes?
HILTON
Baby Freya is about to move from a crib in her parents' bedroom into a cot in her own room. At six months she's passed the peak danger period for cot death but her mother, Lindsay McDermott, is still anxious about not sleeping next to her. Jill Ryder from the Foundation for the Study into Sudden Infant Deaths has come to advise Lindsay how to make the move as safely as possible.
MCDERMOTT
So we're planning to move Freya into a cot soon but as you can see there's quite a few soft toys at the bottom end, I'm just wondering whether or not we should keep those in.
RYDER
I don't think that there is any research on sudden infant death and toys in a cot but the foundation does promote Sleep Simply, in other words just having the bare minimum in the cot that you need. So my view would be that they look lovely but because she can move around probably it's safer to remove the toys when you put Freya into bed.
MCDERMOTT
It's quite a small room so obviously we're limited where we can put the cot and it is quite near the window and the radiator, do you think that's a problem?
RYDER
I think it's fine so far as the radiator's concerned, it's not immediately next to the radiator, so that shouldn't be a problem. I think you just need to be aware, if you're putting her into the cot for a day time sleep, of the direction that the sun's coming into the room and obviously if it is coming straight down on to where Freya's asleep maybe - I see you've got a blind, to pull the blind so that she doesn't overheat. Do you have a room thermometer?
MCDERMOTT
Yes, yes we do.
RYDER
Perfect. So keep an eye on that, if it is too warm open a window and possibly consider using a fan in the summer.
HILTON
Freya's mother is doing all the right things but the messages are still not getting through to all families. Babies born to teenage mothers are six times more likely to die. Jill Ryder explains who's most at risk.
RYDER
Families living in deprived circumstances, teenage parents, smokers and premature babies are also at increased risk of sudden infant death.
HILTON
There are also cultural differences in the death rates. Between 2004 and 2006 in Bradford, a city with quite a high rate of sudden infant deaths, 15 babies died, none of which were Asian. Dr Eduardo Moya, a consultant paediatrician in Bradford, has now started a research project to investigate the differences in postnatal infant care, which could account for the lower rate of deaths in the Asian community.
MOYA
We did a pilot study but we found that none of the Asian families will have the baby in a separate room. So we thought well that's very interesting and must be a strong cultural thing that they want to have their babies next to them all the time as a way of checking on the baby, it's a way of waking up if they hear or notice anything unusual and therefore seems to have some kind of protective mechanism to it.
HILTON
The research project won't report its findings for another couple of years but Dr Moya suspects it will show that the lower rate of sudden infant deaths in the Asian community is due to less smoking and alcohol consumption. Also keeping the babies in the same room. And controversially bed sharing. But bed sharing by the mother and baby alone, without another adult in the bed.
MOYA
We know from some studies done by Professor Ball in Durham that there seems to be a pattern that Asian mothers, Pakistani mothers, who are breastfeeding, they will have the bed to themselves and the babies and the husband won't be allowed in that bed initially when the breastfeeding is established. So there is no other adult sharing the bed.
ACTUALITY
Baby noises.
HILTON
Lindsay and her husband are looking forward to having their bedroom to themselves again after Freya moves into her own room but Lindsay knows she will still worry about cot death for a while.
MCDERMOTT
It'll be good for us to get a bit of space back but I'm kind of resigned to getting less sleep for a while because I know I'll be going in and checking her and after speaking to Jill today I'm kind of reassured that we've done all the right things.
RYDER
So hopefully she should be - she should be fine.
PORTER
Jill Ryder from the Foundation for the Study of Infant Deaths.
Many parents are confused about what is the safest option for a baby. Sleeping in the same room as the parents, but not in the same bed, seems to be the accepted norm now here in the UK. But, as we have heard, sharing a bed needn't be risky. Peter Fleming.
FLEMING
There are many things that we do in Western society that make that normal natural process of having the baby in bed with you potentially risky. One of them is very soft and potentially hazardous surfaces, covers that can slip over the baby's head, mothers who may be affected by drugs, alcohol or tobacco - tobacco has a major impact on sleep patterns and on the way in which sleepers respond, so that sharing a bed with a mother who smokes or father who smokes come to that or has taken drugs or alcohol or someone who's excessively tired because perhaps of the demands of what they've been doing, all of those things potentially make that ultimately very safe environment a potentially hazardous one.
PORTER
And that's a risk presumably of smothering again.
FLEMING
We don't know what the mechanism is but part of it, almost certainly, is a temperature imbalance, the baby can get into an environment where they can get very hot. And that particularly applies to sharing a sofa to sleep, which we found has a huge increase in risk, sofas are extremely dangerous places to fall asleep with babies. Sadly one of the reasons that we found in some of our studies that mothers sometimes fall asleep on the sofa is that somebody's told them not to take the baby to bed with them, so they get up got to feed on the sofa and fall asleep there, which is 25 times as dangerous as taking the baby into bed.
PORTER
Sophie Bissmire and her husband John live with their two children, 16 year old Georgina and eight year old Johnny, in Essex. They had another daughter Niamh, but she died before Johnny was born.
BISSMIRE
Niamh was 13 weeks old and two days, she was a happy breastfed baby. I fed her at six o'clock in the evening and she seemed maybe just a little bit odd, she was feeding okay but just not - a little bit out of sorts I thought. But it was November, so the weather was, you know, not so nice. I fed her at six and had to go out for a couple of hours, I'd just returned to work part-time, so I phoned John at eight o'clock in the evening and I sort of said to him: "How's Niamh?" And he said that she was fine, she was looking round the room, she was happy. I got home at twenty past nine and what had happened was Niamh had fallen asleep on John, cuddling him, and he needed to pop upstairs, so he put her down on a beanbag in front of him, right in front of his chair, went up to the toilet, came back down and thought oh she's sleeping, I'll leave her. I got - as I say - I was in a twenty past nine and I was just standing over Niamh just chatting to John about my evening and I looked down at Niamh and I wanted to feed her and give her a cuddle and I suddenly noticed that she looked like really a funny colour, so I picked her up and I knew immediately that she was - like she had died. I felt quite hysterical, I kind of threw Niamh at John and just rang to the phone instinctively and dialled 999. Went through all the motions, you know, I opened my front door instinctively as well and I was quite hysterical, my neighbour came round and the ambulance came and just came in and kind of just whisked Niamh away, talking to us like saying how long's she been like this and trying to talk to us but running at the same time. So I just ran into the ambulance with Niamh and poor John had to wait for someone to come and sit with Georgina, who was asleep upstairs, till he could drive to the hospital and meet us. And when John - well John arrived at the hospital, he kind of looked all expectant and hopeful and I just - I kind of just cried and shook my head. They did come in and tell us - I think it was about 10 past 10 - the doctors and everyone came in the little relatives room and said Niamh didn't make it, like she was dead. And I can't really explain into words how you feel, it's just a feeling in your stomach, a feeling in your stomach that doesn't go away, you just feel completely devastated and lost.
PORTER
How did they explain it to you at the time, what did they say had happened?
BISSMIRE
They couldn't find any outward signs as to why she'd died. They'd done a check for meningitis and some things and ruled those out but they didn't know. They did say that she would have to have a post mortem.
PORTER
And the police came round to see you later on.
BISSMIRE
They arrived about two in the morning, we left the hospital probably about one because we wanted to stay with her for as long as possible. When I saw them I thought then it did make sense but nobody had actually told us that the police would be calling, so it was a bit of a shock. They were okay, bit cold, I think a lot of things have been done to improve how the police now deal with families of children that have died suddenly at home. They just said don't touch any of her things, they took photographs, a child protection officer was there. You want them to kind of understand how you're feeling inside, so they could treat you, you know, with a little bit more sort of feeling maybe and to like not kind of make you feel like you've done something wrong because you're feeling bad enough. And just completely devastated and shocked as to what's happened.
PORTER
When a child comes into hospital, is pronounced dead, obviously has to go through a post mortem, are there any common patterns that you find in these children?
FLEMING
Well I think one of the most important changes that's occurred, and indeed as of April of this year is now implemented nationally as part of the Children Act, is that the investigation after an unexpected death isn't just a post mortem, one has to look really carefully, collect information carefully from families.
In the past many mothers said to me look everyone was wonderful, they were really kind, they told me I couldn't have prevented it but how the hell did they know because nobody ever asked me what I'd actually done. And one of the things that we've pioneered over the last few years and is now part of a national protocol is visiting the place where the baby has died, looking at it very, very carefully, talking through with parents what's happened. Because much of our understand of what can go wrong has come from actually listening to parents, letting them tell us, talk us through what's happened. In the past the only person who visited the home after an unexpected death of a baby was commonly the police officer who were really just looking for evidence that somebody had murdered the baby. Police officers are not trained, nor should they be expected to make assessments, of infant physiology, infant developmental ability, infant care practices.
One of the things that we've been doing in Avon now for over 20 years is after all unexpected deaths of infants a home visit by a paediatrician, talking through with the parents, working through with them everything that's happened, looking at the environment in which the baby has been sleeping. And for the last eight years that's been done as a routine - joint visit by a child protection police officer with a paediatrician. And that is at least as important as the finding at the post mortem, they're both very important.
Post mortem clearly needs to be done by a children's pathologist. Again in the past many of these were done by adult pathologists who knew next to nothing about babies and indeed the causes of death as certified by some of these pathologists in the past were ludicrous, they showed just such a crass lack of knowledge about babies and how they worked. When we looked at the findings and compared them to what the local pathologist had said with an expert panel of paediatricians and pathologists we found that they were wrong in almost 30% of cases. So you know that's really quite a serious error.
And so putting it all together and also carrying out very detailed investigations for metabolic and some genetically determined conditions that we can now identify.
And then most important of all we have a meeting where we share all that information between the professionals. We find that we now find an explanation for the death in about a half of the babies who die unexpectedly, compared to finding it in only about 20% when we did the same procedure about 10 years ago.
PORTER
But it's still unclear what is happening in the other half where no obvious cause of death can be found. The latest thinking centres on the Triple Risk Hypothesis - first something renders these children slightly more susceptible than their peers;
second, they are at a particularly vulnerable stage in their development
and third, they are exposed to some external factor or trigger. And there is growing evidence that infection is one of the triggers that brings this triad together with catastrophic consequences.
Neil Sabire is a consultant paediatric pathologist at Great Ormond Street Hospital.
SABIRE
We've known for many years that some of these babies when the post mortem is done a definite infection can be found, such as an unexpected meningitis or a pneumonia, for example. But what we really were having difficulty with was how to interpret tests that we do to look for bacteria. And the work that we've been doing recently we specifically tried to look at the role of these investigations and we've found that a significant proportion, maybe up to 25% of these otherwise unexplained cases, infection may play a role but we are not detecting it by our current methodology.
PORTER
And is this infection that would be obvious before the child died, in other words if a doctor had examined the child something might have been seen?
SABIRE
In most cases the answer is no actually, in that there have been several studies where the symptoms have been retrospectively looked at. And in fact although a small proportion of infants that die may have features of snuffles or a mild fever for example, most of the studies show that the frequency with which you find these kind of minor symptoms, that are so common in this age group, is actually the same or not much higher than in normal infants that survive. So if infection is a cause these infections are not those that produce the classical symptoms. For example, it's been suggested that it maybe bacteria that can produce toxins which then have a response that lead to the death or it may be an abnormal response of the baby itself to the presence of these bacteria. But at present we really don't know the mechanisms, these are speculative.
PORTER
If these theories were proved to be correct how might it change our management, and indeed would it change our management?
SABIRE
This is a difficult question and part of the difficulty here is that if it turns out that these organisms are indeed involved in some of these deaths we also know that a significant proportion, around 25% in fact, of babies of a similar age that die of completely unrelated causes, for instance those that die in accidents, those that die with congenital heart disease, you may still find these bacteria. Therefore the finding of the bacteria in itself does not necessarily mean that's caused the death. And therefore, what we're trying to work on and I think what a lot of the focus will be on in future, will be trying to detect these markers of an abnormal response to the infection rather than the infection itself. If it then turns out that we can identify that specific organisms are associated with increased risk then we may be able to, in conjunction with the microbiologists and public health workers, focus on preventative strategies but that's a long way off at present.
PORTER
What sort of organisms are we talking about?
SABIRE
Organisms we believe that are likely to be the most relevant are a couple of extremely common organisms, one called Staphylococcus aureus and something called E.Coli, particularly where they are present in places where they may not normally be found, such as in the lung, where it is possible that they may be relevant in this setting.
PORTER
Do parents find it helpful to be given an explanation or perhaps if I put that the other - is it more difficult for them to come to terms with the loss if the death remains unexplained?
SABIRE
I think it's difficult to know actually because in cases where a definite cause cannot be diagnosed and therefore the cause is given as SIDS or cot death there is always this ongoing wondering of why it happened and whether anything could have been done. But conversely I think sometimes it can be difficult for parents, for example if a cause of death is found, such as, for example, a pneumonia, where again they may be thinking maybe I should have done this, maybe I should have done that. But certainly in terms of planning for future pregnancies for other family members etc., determining the cause can be very important because although they are very rare there are a group of genetic or metabolic diseases which may have relevance for other family members as well. So it's not just for that individual child.
BISSMIRE
When Niamh died on the Wednesday, the post mortem was - she was taken the next day to Great Ormond Street and we got a call on the Friday, preliminary results, saying that nothing abnormal had been found. It was indicating to us a sudden infant death but they were waiting for some toxicology reports and some further tests. And then on the Tuesday my husband got a call from the Coroner's office saying that in some of Niamh's organs they'd found overwhelming Staphylococcus aureus infection but it's still classed as a sudden infant death because other babies can have these bacterias in their system and not react - not die from them.
PORTER
Did you see Niamh again?
BISSMIRE
Yes, yes we did. We went to the chapel of rest on the following day after she died and then we saw again after her post mortem and that was quite devastating because again I knew she was having a post mortem and I knew - I thought I knew what that involved but not - I didn't realise the extent of what's done at a post mortem. But I was quite happy for them to do what they needed to do to try and find a reason why she died but I just wish I'd been kind of warned a little bit more.
PORTER
Because you could see the scars of the post mortem.
BISSMIRE
I could feel the scars in her head and I didn't realise that she'd be cut there. I wanted to dress her myself but they did discourage me from that. But I combed her hair and things like that and held her a lot.
PORTER
Now you have two other children - Georgina who was what seven or so at the time and Johnny who came along a year later, so you had another baby. How did it change your behaviour as a mum having lost a child to sudden infant death syndrome?
BISSMIRE
Well I was quite a relaxed mum before, I always knew I was a good mum but I was quite relaxed, never thought that cot death or sudden infant death would happen to anybody like me because I wasn't particularly young and I didn't smoke. So when Johnny was born I was - I'll admit it - I was very anxious, still am - nearly eight.
PORTER
And practically how did that - what did you do that was different that you hadn't done before perhaps?
BISSMIRE
Checking during the night about a hundred times. Always laid him on his back, always, because before I didn't realise the importance of that. Would never lay him on anywhere - you know I'd just kind of followed all the advice that the FSID give out.
PORTER
And indeed now you work for the help line, what sort of calls do you get?
BISSMIRE
We get a variety of calls, we get calls from bereaved parents - sometimes they've been bereaved many, many years and maybe they've had a grandchild and it's prompted them to have emotions stirred that they haven't felt for a long time so they give us a call. Or it's new parents or newly bereaved or professionals. In the evenings it does tend to be like parents, either new parents or a recently bereaved parent.
FLEMING
The numbers have fallen dramatically and we've been looking in the South West of England in great detail by actually looking at every individual. The problem if we look at national statistics based on death certificates is they're often a little bit inaccurate. But when we look at it very, very carefully we can say there's been approximately an 80% overall reduction. Nationally we're probably talking about somewhere between three and four hundred babies dying a year now, compared to 2,000 only 20 years ago. The numbers of babies who survive now, who might not have done in the past, is therefore really quite substantial. So, for example, in the UK there are probably somewhere in excess of 20,000 children and young people alive now as a consequence of those changed practices compared to what was going on 20 years ago. Across Western Europe probably between a hundred and two hundred thousand and worldwide probably three or four times that number. So a very, very large number but one of the - I suppose one of the positive things is none of those individuals know who they are, none of them know and indeed perhaps none of them ought to know.
ENDS
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