Cot death and sudden infant death syndrome (SIDS) Q&As
Published by Bupa's health information team, June 2009.
Answers to questions about cot death and sudden infant death syndrome (SIDS)
This section contains answers to common questions about this topic. Questions have been suggested by health professionals, website feedback and requests via email.
- I have lost a child to cot death before and am now pregnant again. Is it likely I will lose another child to cot death?
- I have just lost my baby to cot death and have been told that a post-mortem examination must be done. Why? What might this involve?
- Is it safe to use second-hand baby equipment such as mattresses and sleeping bags?
I have lost a child to cot death before and am now pregnant again. Is it likely I will lose another child to cot death?
The risk of a baby dying unexpectedly and without explanation is slightly higher in families who have already lost a baby in this way. However, cot death is still rare and fewer unexplained deaths attributed to sudden infant death syndrome (SIDS) are being recorded every year.
Explanation
It's estimated that SIDS affects around one in 500 babies born into families who have already lost a baby to SIDS. This compares with around one in 3,300 in families who haven't.
When you have already been through the tragedy of cot death, pregnancy and the first months of your new baby's life can be a time of mixed emotions - joy and anxiety as you prepare for your new baby; sadness and grief as you think of the baby you lost. You're bound to have some or all of these emotions in this situation but it's important to try to keep a balance and stay positive.
If a cause of death was established for the baby you lost previously, you should talk to your doctor or midwife about any tests or precautions that may be appropriate during your pregnancy and after your new baby is born.
Talk to your midwife about your concerns. He or she will be able to offer you extra support and advice throughout your pregnancy and as you prepare for your new baby. Ask if there is a suitable support programme in your area which might be able to offer additional support and information.
Care of the next infant (CONI) is a programme that was set up and is jointly funded by the Foundation for the Study of Infant Deaths (FSID) and local health services to support families who have been bereaved by cot death as they prepare for their next child. The CONI programme is available in 190 centres across the health services in England, Wales and Northern Ireland. CONI isn't yet available in Scotland; however, if you live in Scotland, your midwife or GP will be able to tell you about the services that are available in your area.
Your midwife should be able to put you in touch with your local CONI coordinator (who is often a health visitor, midwife or community nurse). The CONI coordinator will:
- discuss the programme with you in detail
- talk to your midwife, health visitor and GP about the programme
- arrange for you to see a CONI paediatrician (a doctor who specialises in children's health and also has specialist knowledge about cot death)
During your pregnancy and after the birth of your baby, the CONI programme can offer the following services.
- Regular (weekly) visits from an experienced health visitor until your new baby is six months old, or until he or she is two months older than the baby you lost was at the time of his or her death.
- Diaries in which you can note down your concerns and any symptoms you notice in your baby that you may be worried about. You can then discuss your diary with your health visitor at your regular meetings and this may help identify any problems or reassure you that all is well with your new baby.
- Weight charts to help you to keep a careful track on your baby's growth and development.
- Room thermometers to help you to make sure that your baby's room (and any other room in which your baby sleeps) is at the correct temperature (16 to 20°C).
- Movement (breathing) monitors that will alert you if your baby stops moving (breathing) for a certain period of time. However, there are mixed views on the usefulness of these monitors - some doctors believe they give a false sense of security.
If the CONI programme isn't available in your local area, your local health authority may have its own scheme in place which could offer similar support during your pregnancy and after the birth of your new baby. Talk to your midwife or GP about what is available in your area.
Further information
- Foundation for the Study of Infant Deaths (FSID)
020 7233 2090
www.fsid.org.uk
Sources
- Care of the next infant (CONI). Foundation for the Study of Infant Deaths. www.fsid.org.uk, accessed 11 July 2008
- Bacon CJ, Hall DB, Stephenson TJ, et al. How common is repeat sudden infant death syndrome? Arch Dis Child 2008; 93:323-326. www.adc.bmj.com
- FAQ - Current topics. Foundation for the Study of Infant Deaths. www.fsid.org.uk, accessed 9 July 2008
I have just lost my baby to cot death and have been told that a post-mortem examination must be done. Why? What might this involve?
Losing a baby to cot death is a terrible thing and being told that a post-mortem examination must be done can be very upsetting. However, it's important to remember that this is a standard procedure in this situation. Most bereaved parents find it helpful to try to establish the cause of their baby's death. A post-mortem will involve a number of examinations and tests which aim to help establish why your baby died.
Explanation
The national guidelines make it a requirement for all health authorities to fully investigate cot death cases.
After a cot death, a specially trained police officer and a paediatrician will usually visit the place where it happened and talk to the parents. This is to find out the circumstances of your baby's death (for example, the place and time) and to learn about the medical history of your baby and his or her family. Other people who have had contact with your baby (such as midwives, health visitors and GPs) may also be asked for information. A post-mortem examination will be ordered by the coroner and performed by a pathologist (a doctor who specialises in establishing causes of death).
The main aim of a post-mortem is to establish whether there was an identifiable cause of your baby's death, such as a bacterial or viral infection or a problem with one of your baby's organs (for example, the heart, lungs or brain).
If your baby had an infection, it may be necessary to make sure that other members of your family aren't affected. If an inherited condition is found, this may affect your other children and precautions can then be taken to help prevent this from happening to your family again.
A post-mortem will usually be carried out within 48 hours of your baby's death. The earlier it is done, the more likely it is that useful information will be obtained. The detailed results of a post-mortem may not be available for many weeks due to the time it takes to carry out all of the laboratory tests required. However, this doesn't mean that you will have to wait this long before you can hold a funeral. You can arrange this as soon as the post-mortem itself has been completed.
A post-mortem of a baby is usually carried out by a paediatric pathologist (a doctor who specialises in looking for signs of disease in children) or a forensic pathologist (a doctor who specialises in establishing causes of death). The pathologist will carry out a detailed external and internal examination of your baby looking for any indications of disease.
Samples of your baby's blood, urine and some small tissue samples (such as liver and kidney) will be taken by the pathologist for future examination. You may be asked permission for samples of brain tissue to be taken. This can be a very difficult and upsetting decision to make as this process may prolong the post-mortem. However, the brain is often the most important source of information regarding a death and therefore study of the brain can be one of the most useful parts of a post-mortem.
New examination techniques are being developed by scientists all the time. It's possible that by looking at tissue samples from many babies using these new techniques, a better understanding of the causes of cot death, and how to prevent it, may be found.
It's important to remember that post-mortems are carried out in all cases of unexpected death and your baby will be treated with the utmost care, respect and dignity at all times during the post-mortem process. A post-mortem is the most likely way to find out why your baby died and understanding why your baby died may help you grieve for your loss. However, sometimes, despite a detailed post-mortem and investigation, the exact cause of death will remain unknown.
Further information
- Foundation for the Study of Infant Deaths (FSID)
020 7233 2090
www.fsid.org.uk
Sources
- Sudden unexpected death in infancy: a multi-agency protocol for care and investigation. Royal College of Pathologists and Royal College of Paediatrics and Child Health, 2004. www.rcpath.org
- Guidelines on autopsy practice. Scenario 8: Sudden unexpected deaths in infancy (SUDI). The Royal College of Pathologists, 2005. www.rcpath.org
- Working together to safeguard children: a guide to inter-agency working to safeguard and promote welfare of children. HM Government, 2006. www.everychildmatters.gov.uk
Is it safe to use second-hand baby equipment such as mattresses and sleeping bags?
Ideally, you should buy a new mattress for a new baby. It's been shown that there is a link between the use of second-hand mattresses and cot death. Sleeping bags (new or second-hand) are safe to use as long as they are the right size for your baby and the right thickness for the temperature of the room in which your baby sleeps.
Explanation
The link between second-hand mattresses and cot death is most apparent with mattresses which come from another household (for example, bought second-hand or given to you second-hand). However, there is still an increased risk of cot death if you re-use a mattress which was bought brand new for an older child in your own home.
It's been suggested that bacterial infections may play a role in cot death. Staphylococcus aureus (S. aureus) and Bordetella pertussis (B. pertussis) are types of bacteria that have been identified as possible causes of cot death in several studies. Both S. aureus and B. pertussis bacteria have been found in used mattresses. It's not yet known whether the presence of these bacteria in used mattresses could be a direct cause of cot death.
Ideally, you should buy a new mattress for a new baby. However, if you need to re-use a mattress you should only do so if:
- the mattress was made with a waterproof covering (adding a waterproof covering to a mattress which didn't previously have one isn't enough)
- the mattress cover is in good condition - no tears, splits or holes
- the mattress itself is firm, doesn't sag anywhere and fits the cot without any gaps
- you clean and dry the mattress thoroughly before use
A second-hand baby sleeping bag is a safe alternative to traditional cot bedding (sheets and blankets) as long as:
- it's washed thoroughly before use
- it doesn't have a hood
- it's the right size for your baby (in particular it should have the right-sized opening at the neck)
- it's the right thickness (has the appropriate tog rating for the time of year)
- your baby has the appropriate clothing on underneath
If you're buying a second-hand sleeping bag, it's important to know what age range it's for and what tog rating it has. You need to be careful because this information is often only found on the label inside the sleeping bag and printing on this can fade with washing. If you're in any doubt about what size a sleeping bag is or what tog rating it has, don't buy or use it.
If you do find a second-hand sleeping bag and know what tog rating it has, it's important to know what clothing your baby should wear when using it, such as a vest alone or a vest and pyjama top. There are different recommendations about clothing depending on the tog rating of the sleeping bag and the temperature of the room in which your baby is sleeping. You should be able to find out this information by looking on the manufacturer's website or by phoning them.
Further information
- Foundation for the Study of Infant Deaths (FSID)
020 7233 2090
www.fsid.org.uk
Sources
- Sherburn RE, Webb TE, Jenkins RO. Detection of toxigenic bacteria in polyurethane foam from cot mattresses by polymerase chain reaction. Jpn J Infect Dis 2007; 60:19-22. www.nih.go.jp
- FAQ - Current topics. Foundation for the Study of Infant Deaths. www.fsid.org.uk, accessed 9 July 2008
- Tappin D, Brooke H, Ecob R, et al. Used infant mattresses and sudden infant death syndrome in Scotland: case-control study. BMJ 2002; 325:1007. www.bmj.com
- Keep an eye on your baby's room temperature. Foundation for the Study of Infant Deaths. www.fsid.org.uk, accessed 11 July 2008
Related topics
- Bereavement
- Depression
- Preparing for pregnancy
- Routine care during your pregnancy
- What to expect during pregnancy
This information was published by Bupa's health information team and is based on reputable sources of medical evidence. It has been peer reviewed by Bupa doctors. The content is intended for general information only and does not replace the need for personal advice from a qualified health professional.
Publication date: June 2009
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