When a baby has died suddenly and unexpectedly, there are important decisions to be made, at a time when parents probably feel devastated, confused and exhausted.

If your baby has died unexpectedly, the law requires that the death be referred to the Coroner, who has the authority to order a post mortem examination. There are a number of people who may meet with you to discuss the post mortem; these are most likely to be a doctor or a Coroner’s Officer, but possibly another care professional such as a specialist nurse. This person will explain to you that it is now recommended that your baby be examined by a specialist paediatric pathologist, who will conduct the post mortem. This may mean that your baby will be taken to a paediatric hospital large enough to have such a specialist on site.

During the post mortem examination, the pathologist will take tiny samples of tissue from the baby, and preserve them in a small block of wax. Very thin slivers from the wax block are then put into slides, so that they can be examined under a microscope. Shown right, is a picture showing what a block and slide look like in relation to the size of a 2p coin.

Once the post mortem is concluded and the pathologist has completed the examination, a decision has to be made as to what to do with the tissue samples contained in the blocks and slides. The law requires that you are asked what you would like done with them and you have the right to decide from among the following three options:

1. To allow the pathologist to retain the tissue samples for research or other purposes. [Other purposes could include for example retention for your baby’s medical records or for teaching. The samples are identified only by a reference number.]

2. To allow the pathologist to dispose of the samples

3. To request the return of all the tissue samples to you

Very occasionally it may be necessary for a whole organ, such as the brain, to be retained for a longer period of time if the pathologist thinks a more certain diagnosis of the cause of death may be found. You should be told if this has happened so that if you wish the organ to be returned to your baby you may arrange to delay the funeral until this has happened. If a family chooses to have a funeral and then requests the return of the organ, they should know it may not be easy to arrange for its burial or cremation. In these rare circumstances almost all families choose to delay the funeral, in order to ensure that the organ is returned to the baby

It may be very difficult at such a time to consider and decide which of the above three options to choose. You may find it helpful to know that most bereaved parents, when asked, do give their consent for the tissue samples to be retained for research and teaching purposes. Parents who have suffered a baby’s death, suddenly and unexpectedly, often welcome medical research to try to learn more about what causes these terrible tragedies, partly to prevent others suffering the same distress in the future. A diagnosis of SIDS or cot death is very frustrating for many families as it does not actually explain why their baby died. As medical science progresses, it is possible that the cause of death of their own baby might one day be explained if tissues are kept for future testing as part of the baby’s medical record. Keeping tissue can be especially valuable to families if they go on to have other children, as examination of the tissue may in future reveal important genetic information.

Carrie Langford, a bereaved parent in Truro, whose son, Merrick, died as a cot death, said,

“It was immensely rewarding, and gave me and my family great comfort, to know that Merrick’s tissue samples were retained to help prevent future deaths...I think it is so important for parents to be given a full explanation of their rights about retention of tissue samples from their baby’s post mortem. These samples may lead, in future years, and in light of new knowledge to an explanation of their baby’s death. Or, from a donation to teaching or research project, they may lead to knowledge that will prevent other families from suffering this tragedy.”

Read Carrie's full story...

To talk things over with a knowledgeable and sympathetic advisor, please call the FSID Helpline on 020 7233 2090 or email helpline@fsid.org.uk