The Scottish Cot Death Trust works with a wide range of professionals providing up to date advice on how to reduce the risks of sudden unexpected death in infancy (SUDI); advising on the support available to bereaved families and supporting you in your own work with bereaved and distressed families.
We can also offer support to professionals affected by SUDI.
Supporting grieving families
Working with a family whose baby or child has died suddenly and unexpectedly can be very difficult.
It is natural to be anxious about that first contact with the family, but it is important to remember that they might be looking to you for information about what has and is happening and for bereavement support.
Families will be in state of shock, they may not remember who you are, why you are there or how you can help them. We advise that you leave written information where possible to back up what you have talked about.
One of the most important things you can do is to make contact with the family as soon as you become aware of the death. Just being available to listen is a great help to the families.
A visit from the Health Visitor or GP soon after the death is also very important.
They can check that the family received a copy of the leaflet ‘Support for Families’ which will explain the medical and legal procedures which follow a sudden death.
Parent’s should be reassured that police involvement, their child’s death being investigated by the Procurator Fiscal and the need for a post-mortem examination are all required by law in Scotland. This happens in every situation when a baby or young child dies suddenly and unexpectedly and is routine for all families. It does not indicate that the family is under suspicion and every effort should be made to reassure the family that they are not being investigated but that the reason for their child’s death is.
If the mother still has to attend for post-natal check-up, arrangements should be made to ensure the minimum distress.
If mum was still breastfeeding offer advice about dealing with the milk supply.
If there are other children who attend school or nursery it is helpful to offer to let their teacher(s) know what has happened.
Ensure that the baby’s mum knows that although her baby has died she is still eligible for free dental treatment for a year after the birth.
The maternity unit where the baby was born should also be informed (if appropriate depending on the baby’s age at death).
A few Do’s and Don’ts
Try not to think too much about what you can and cannot say as this can lead to worrying about what to say and so saying nothing. This can be one of the most hurtful experiences for bereaved families. They often report feeling abandoned. There are a few simple points to remember when supporting a newly bereaved family.
- Look at our resources for professionals.
- Make contact with the Scottish Cot Death Trust for guidance or advice before you make contact with the family.
- Say how sorry you are.
- Use the baby’s name.
- Ask if there is anything you can help within your professional capacity.
- Offer further contact.
- Check if they have information about the Scottish Cot Death Trust’s support services.
- Leave your own contact number and any written materials you may have which might be of help to the family.
- Assume that someone else has already referred the family to the Scottish Cot Death Trust for support.
- Use phrases such as “you’re young enough to have another baby”; “time’s a great healer” etc.
- Try to explain why their baby or child might have died.
- Ask them to repeat their story unless they wish to do so.
- Speculate about anything you aren’t sure about.
If the child was a twin or triplet
If the death is that of a twin, the remaining twin should be carefully checked and an apnoea monitor is often issued if the parents wish this. In most areas the surviving twin may be admitted to hospital for observation.
Other children in the family
Parents often do not know what to tell their surviving children and may ask for support and advice concerning this.
Even if children are too young to understand the concept of the permanence of death, use of the proper words at this stage is important.
Children should be told the truth, that their sibling will not be coming back. Children should not be told that the baby has gone to sleep as they may become frightened of sleeping.
They also need to be reassured that the baby’s death was not their fault, this is particularly important if the other sibling was jealous of attention given to the baby.
Children should be reassured that no-one is to blame and that their parents, despite their grief, still love them.
Parents may find the demands of other children difficult to cope with while trying to cope with their own grief. Children may show more difficult behaviour in the days after the baby’s death as their parents’ grief and the death of a sibling can make them feel very insecure.
Parents should be reassured that their feelings of irritation and any changes in their child’s behaviour is normal.
The Scottish Cot Death Trust’s book called ‘Rory’s Star’ aims to help parents explain bereavement to children. Copies can be provided to all families with young bereaved siblings.
Remember that the Scottish Cot Death Trust can provide ongoing support for parents, no matter how long ago their child died.
Supporting bereaved parents
Although many parents may give the impression they are coping well, it may take time for them to face the reality of their baby’s death. Grieving is a very difficult process and families need ongoing support.
There are often many physical symptoms of grief.
Parents may have difficulty in sleeping, nightmares; imagine hearing and seeing their baby, pain in the chest and arms, strong positive or negative sexual feelings, nausea and feelings of panic, fear and isolation. Many worry that they are losing their mind.
They should be reassured that all these symptoms are normal parts of grieving.
Parents may find it difficult to talk to each other or those close to them. GPs and Health Visitors play an important role in listening to the separate needs of parents.
When a family has suffered the loss of a child suddenly and unexpectedly it is important that they know what help and support is available to them. The Scottish Cot Death Trust can offer a wide range of support services to bereaved families regardless of where they live in Scotland.
If you are working with a family whose child was pre-school aged and has died suddenly and unexpectedly, you can still refer the family to the Scottish Cot Death Trust for support.
Anyone can refer the family to the Scottish Cot Death Trust for support and you should not assume that someone has already made a referral. If you are unsure whether or not a referral is appropriate, please phone us to discuss it first.
You will need the family’s consent to pass their details on to us, and you will need their name, address, contact numbers, information about the baby, their GP details and any other relevant information.
Making a referral is easy – you just need to phone us on 0141 357 3946.
Resources for professionals
The Scottish Cot Death Trust provides training for a wide range of professionals on many aspects of cot death, we can provide advice on reducing the risks and supporting bereaved families. We also run various training seminars.
For more information or to request for a speaker to come to your group, please contact us.
Nurseries, Crèches & Childminders
The Scottish Cot Death Trust has worked closely with the Care Inspectorate to ensure that safe sleeping practices are in place when they conduct inspections. The Early Years Guide will give you advice on how to reduce the risks of cot death occurring and help to prepare you for these inspections. The Early Years Guide can be downloaded at the bottom of the page.
The police are often the first people to arrive at the scene when a baby or child has died suddenly and unexpectedly. The Scottish Cot Death Trust has developed a pocket-sized leaflet aimed at helping you in your professional dealings with bereaved families. The Information for Police Officers leaflet can be downloaded below.
In conjunction with Bliss Scotland, the Scottish Cot Death Trust produced two separate information leaflets on reducing the risks for premature babies. One is aimed at staff in special care baby units and the other is aimed at parents.
These leaflet for staff can be downloaded below while the resource for parents can be found here. Both can be ordered by contacting us.
Support for professionals
The Scottish Cot Death Trust can act as a source of advice and support for professionals. For further information or to request a speaker/education pack please contact us.
If you are struggling at all following the death of a baby or young child in either a family you support or because you were a first responder at the time of the death – we are here for you too. Please contact us.