To help answer these questions, parents may be approached about an autopsy (‘post mortem’) examination.
However, some parents are understandably reluctant to consent to an autopsy. In recent years, a number of ways of performing autopsy which are less-invasive have been developed. For example, a new method which involves an MRI scan has been shown to provide highly detailed information.
In the video below, Lydia our Senior Mortuary Manager and Ciaran, a Clinical Research Fellow discuss the different options in more detail.
Researchers at Great Ormond Street Hospital (GOSH) are conducting a study to understand what parents think of these new methods and whether they would be preferable to a full autopsy. The study is funded by the National Institute for Health Research, Health Technology Assessment Programme.
We are inviting parents and families, as well as health professionals, patient advocates, commissioners and coroners to take part in this study. We will ask people to answer questionnaires and take part in interviews and focus groups. It is important for us to hear from as many people as possible about this topic so that we can ensure everyone’s views and preferences are taken into account when developing services.
In the video below, Erin our Patient and Public Involvement Officer, discusses the study in more detail.
The team conducting this study is led by Neil Sebire, Professor of Paediatric and Developmental Pathology at GOSH, Lyn Chitty, Professor of Clinical Genetics and Fetal Medicine at GOSH and University College London Hospital, and Celine Lewis, a social scientist from GOSH.If you would like further information about this study, or would like to find out about taking part, you can contact Celine on firstname.lastname@example.org