https://www.gosh.nhs.uk/wards-and-departments/departments/clinical-support-services/bereavement-services-information-parents-and-visitors/what-expect/
What to expect
Following the death of a loved one, most people experience a whole range of different emotions. Initial feelings may include disbelief, numbness, anger, sadness, guilt, emptiness, maybe even, in some instances, a sense of relief. These feelings may be mixed up together and you wonder if you are going mad. It is very likely that, despite the nature of the emotions you are experiencing, which may be strong and frightening, you are reacting normally to the bereavement you have suffered.
It is also likely that other people around you may be feeling similar emotions. For example, if you have other children they will also have equally strong feelings and may need a trusted person or friend in whom to confide.
Common feelings
The numbness you felt initially will pass in time, but feelings of occasional disbelief, terrible sadness, anger, guilt and emptiness may remain very powerful. Many bereaved parents mention similar experiences such as:
- The feeling of being on an emotional roller-coaster.
- The need to talk about the child constantly.
- Trying to put on a brave face for others.
- The question “Will I ever feel better?”
- The feeling that there is no point in getting up to start the day.
- The feeling that no future can be envisaged – to the extent of thoughts of suicide.
- The feeling of constant struggle to live hour by hour and day by day.
Ways of coping
Some parents will need to talk about the child’s death over and over again for many months. Some parents will not want to talk about it at all, and will wish to try and divert their feelings, some of the time, into work and hobbies, sometimes to an obsessive extent.
The greatest difficulty may be experienced where one parent needs to talk, and the other cannot listen or express their own feelings.
It is very common for partners only to have energy for their own grief and be temporarily unable to help each other. You may have to acknowledge together that you are expressing your grief in different ways, and respect each other’s need to find support in your individual ways.
Having someone listen to the way you feel is almost always helpful. Try not to be afraid to ask for help, outside the family if necessary, especially if you feel that your need to talk is a further “burden” on relatives and friends.
Finding help
Talking to someone you met at the hospital may be helpful, or you may find support through the hospital Social Work department, your GP, Health Visitor, or child’s teacher.
There are also specialist voluntary groups and organisations for families whose child has died in particular circumstances.
There may also be groups of parents, perhaps in your area, who meet through such organisations to share experience and mutual support.
As at the time of your child’s death, do not be afraid to ask for help; talk to someone you trust about the way you feel. You may also have difficult times as the days and weeks and months go one and the anticipation of anniversaries may be especially difficult. Unexpected and poignant feelings and reactions may take you by surprise and again, don’t be afraid to get help.
Taking your child home after they have died
The following information is provided to ensure that you are aware of the possible options for taking your child home after they have died. We realise that this is a very personal decision at an incredibly difficult time, and we want to support you in deciding what is best for you and your family. This information includes how to contact us and other sources of advice and support.
Please note: the following information contains details which may be upsetting or distressing.
Some families tell us that it is important for them to be able to bring their child home after they have died. This offers an opportunity to spend time together in familiar surroundings with family and friends. When the relevant documentation has been completed, you can usually bring your child home directly from the ward. If a post-mortem examination is required, you can arrange to have your child home once this has been completed.
If you do not wish to bring your child home, it may be possible for them to be moved to your local hospice. If not, your local funeral directors will be able to transfer your child into their care.
You can travel in your own car if your child can be safely placed in a Moses basket. You will be given a letter by the nursing team to take with you which will explain that you are transporting your child after death, the letter includes our contact details. If travelling in your own vehicle your child needs to be safely secured. For older children we recommend the use the services of a funeral director.
GOSH also has an arrangement with a funeral director who will transport your child and one family member free of charge to your home or another agreed location (within mainland UK).
If you decide to use our appointed funeral directors, our staff will arrange this. The funeral directors are located outside of London and require at least three hours’ notice. Our staff will tell you when the funeral directors are likely to arrive and will inform you of any delays (for example due to traffic). This service is available between 9am and 5pm seven days a week.
Our funeral directors have a specially adapted car for GOSH patients and families. When your child dies, they will be transferred to the lobby in the hospital mortuary where they will be collected by the funeral directors. The nursing team will support you and introduce you to the funeral directors.
They will place your child either in a Moses basket or on a special stretcher bed. It is not possible for you to carry your child in your arms during the journey, but they will be next to you in the car.
There may be changes to your child’s appearance (in particular to their skin) and body which can start soon after you bring them home. We realise that this can be distressing, and our staff, including the palliative care team, will be able to explain what to expect. They will be guided by you on the level of information you find helpful and can be contacted if you have any questions. If you are known to a local hospice they too can advise.
It is your decision how long your child stays at home, but it is very important that during this time your child is in a cool and well-ventilated room. No windows should be open to prevent anything such as insects etc. coming into the room.
Cold cots or beds can often be borrowed or hired from your local hospice or your local children’s community nursing team. Your chosen local funeral directors may also be able to offer advice on this.
We know that at such a difficult time, you may change your mind. If this happens while your child is still at the hospital, please speak to our staff as soon as possible.
If this happens after your child has left the hospital, we advise that you contact your local hospice or funeral directors to arrange for your child to be taken into their care. We are sorry that it is not possible for your child to come back to GOSH.
You will need to appoint local funeral directors to carry out your child’s funeral or cremation. We recommend this is done before you are leaving the hospital as they can support you at home. They will be able to advise you on the options available and will come to your home to collect your child.
Organisations which can help you to choose a funeral director and advice:
Please contact Bereavement services at GOSH on 0207 813 8416 or 0207 813 85.
Alternatively contact PALS (Patient Advice liaison service) by telephone on 0207 829 7862 or by email on pals@gosh.nhs.uk
Please note that these services are open from Monday to Friday between 10am- 5pm.
'Taking your child home after they have died: Information for families' REF 2023F2359