Family Screening, further investigation and research
Families who have experienced the sudden, unexplained death of their child often ask, “Should I have my other children tested?, “Should we be tested?” or “What about our other relatives?” These important questions may be followed by the response of “Tested for what?”. At this time, we do not know how to predict or prevent deaths which we do not understand. However, we do know that some rare, inheritable disorders can cause sudden death.
It is important that GPs/paediatricians discuss tailored medical screening with each family and we are here in support throught this process and beyond.
SUDC UK speaks via zoom with families to support them as they navigate their child’s investigation, consider family screening and, in some cases, pregnancy after loss. We have personal experience and professional insight into screening, genetics, supporting siblings and research enrollment and would love to help. To arrange a zoom meeting, please contact us.
Possible considerations for you and your doctor.
Genetic analysis
From 2023, any unexplained infant or child death in England is eligible for whole genome sequencing and analysis of genes associated with sudden death. The test is called R441 for SIDS and SUDC and SUDC UK has worked hard to champion and help launch this testing. It is listed in the National Genomics Test Directory for Rare Disease and it analyses known cardiac, neurological and metabolic genes that are associated with sudden death. If you live outside England, professionals may be able to refer you for similar comprehensive tests.
If you have not been told about genetic investigation yet, your GP or paediatrician will be able to refer you. We advise explaining why you feel this would help your family if it was processed urgently.
Inherited Cardiac Conditions (ICC)
Cardiac (heart) channelopathies are heart rhythm disorders which are associated with sudden death. Across the UK, there are inherited cardiac conditions clinics run by cardiologists, paediatric cardiologists and geneticists who specialise in these disorders. Many families (parents and children) in our community have tests like ECGs and ECHOs and 24 hour tapes completed for a thorough check up. These specialists have experience in supporting other families affected by SUDC and having these tests can feel reassuring.
GPs can refer to a regional inherited cardiac conditions clinic. There are guidelines supporting this referral and a clear National Cardiac Pathway (launched in May 2025) that states if a post mortem says a death is unexplained and the a child is over 1 year, families should be referred for cardiac screening. Once referred, it may take 8-12 weeks to see a specialist. It is worth asking if it is possible the referral could be marked as urgent as this may speed up the process. If a professional would like more information about this pathway they can view a webinar on it at ncmd.info.
There is an association between SUDC and febrile seizures
Scientific research studies and a population analysis of sudden and unexpected child deaths in England have identified an association between febrile seizures and SUDC, with approximately one third of children affected having had a medical history of febrile seizures. This association with SUDC is currently poorly understood and more scientific research is required. For more information about this research please visit www.sudc.org.uk/seizures. The SUDC Foundation resources below have more information on care for families and febrile seizures in siblings and if you have any questions please contact us.
Research
Families can find it incredibly helpful to enrol in research projects to help further scientific understanding in the hope of preventing future deaths. There are different research centres with an interest in SUDC and currently SUDC UK directly refers to the largest global database of SUDC cases, a project called the SUDC Registry and Research Collaborative (SUDCRRC) which SUDC UK has proudly part-funded through research grants. If you would like to discuss options for research, please contact us. For enrolment samples must be retained – you can watch a video about this here. This is a difficult subject and we are thinking of all families watching this.
If you have R441 genetic sequencing (as described above) you can decide to be part of a Genomics England official SIDS/SUDC project. This dedicated new project in England aims to help identify new genetic information on sudden, unexplained infant and child deaths. It is only possible if the next of kin consents to inclusion in the National Genomics Research Library when consenting to whole genome sequencing. You can also consent at a later date by completing this form: https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-participation-in-research-form.pdf
Resources from the SUDC Foundation
The SUDC Foundation has excellent information on medical screening. Please click here to access this site and learn more including their guidance document entitled, “Care for the SUDC Family: Medical and Bereavement Information for the Clinician’s Consideration”.
If you would like to learn more about national guidelines or scientific research SUDC UK also has professional resources.