The Procurator Fiscal will instruct a Paediatric Pathologist to carry out a post mortem examination on your baby/child’s body to try to find a cause of death. This is a legal requirement in Scotland because a body cannot be released to the family to hold a funeral until a death certificate can be issued. A death certificate can only by law be issued when a cause of death can be provided. In the case of a sudden unexpected death of a baby or young child it is not possible to say before a post-mortem has taken place what caused the death.
Because Paediatric Pathology is such a specialist field of pathology, it is likely, depending on where you live, that your baby’s body will be taken a mortuary in either Glasgow, Edinburgh or Aberdeen. There are currently five consultant paediatric pathologists who undertake post-mortem examination on babies and young children who die suddenly and unexpectedly.
It is not unusual to wait a few days before the post-mortem is able to take place. Someone from the hospital who first met you when your baby died, a paediatrician from the area where you live or someone from the police will keep you informed of what is happening and can arrange for you to see your baby at the mortuary of you want this.
When Can I Expect Results?
The first results from the initial post-mortem examination will be available within a few days and after this your baby/child’s funeral can normally take place. It may be the case that an interim death certificate is given to your family. This allows you to have a funeral for your child but it also means there are test results which the pathologist is waiting for. These early results are not able to give all the detail that can help to tell if your baby/child had a rare disease or if there was anything unusual that might help to explain why your baby or child has died suddenly and unexpectedly.
During the post-mortem examination samples of tissue and blood will be taken for further tests, to try and explain your baby/child’s death. The samples will be kept as a permanent part of your baby/child’s medical record. the pathologist will test for many different diseases and conditions which does take many months to complete. The tests for some rare genetic disorders involve seeking opinion of experts, which adds time.
The results of these further tests should be available by around 6 months but every case if different and it is important to remember that delays are because everyone is working hard to help understand what has happened not because your baby and your family have bee n forgotten about.
When the results of tests on all of the samples collected at the post-mortem examination are available a cause of death may be revealed in a small number of cases. In others, a possible contributory factor to death may have been established although this does not adequately explain the death. In the majority of cases, there is no explanation at all for the death.
From the results shown the Pathologist will issue a final death certificate which will either give an explained cause of death (if one has been identified) or a diagnosis such as “sudden unexpected death in infancy” or “unascertained” if the death remains unexplained.
Each of the above scenarios carries with it unique challenges for families and this can be a reason for reaching out and seeking support and counselling. Families can feel angry if they have a cause of death and wonder if there was a health related problem with their child that was missed or that their death may have been prevented. If families have the news that their baby died from a genetic condition this can have an impact on the health of other children in the family and for any future pregnancies. Your family will be referred for genetic screening if this is appropriate. If the cause of your child’s death remains unexplained, it can be difficult to imagine living your life not knowing what happened. If it would help to access formal bereavement counselling this can be arranged for you through the Scottish Cot Death Trust.
Can someone explain the results to me?
You can have a meeting with the Paediatric Pathologist who carried out the post-mortem examination of your child. Only you will know if this feels right for you and when would be the appropriate time to have a meeting. All of the Paediatric Pathologists are available to meet with you and sometimes it helps if you can prepare some questions ahead of any meeting. This means that you have time to think about questions you have. If you do not want to meet face-to-face they would be very happy to talk with you o the phone too. Mortuary staff across Scotland care deeply for the babies and children they see. Their role is very important in helping understand what has happened and they their care extends to the family too. It can be of comfort to meet the person who played such a caring role for your child after they died.
We can help arrange a meeting for you if this would be easier. There is no time limit on when this happens. The pathologist will remember details about your child for many years after they died, such as the colour of their hair. Parents have found it comforting to know how much care their baby or child was given after they died.
Can I help other families in the future through research?
If you feel able to make the special gift of allowing part of these samples to be used for research into sudden unexpected death in infancy, you can give your permission for this. Everyone involved with you is trying to help understand why your baby/child died and how further infant deaths can be prevented.
If you would like to keep in touch with the Scottish Cot Death Trust to be involved in prospective research as and when projects begin, you can contact us and we will keep your details on file and contact you if families are being recruited for research projects.