FAMILY SCREENING

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

 

Female doctor holding hand of woman

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 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. These specialists will 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 for families. There are guidelines supporting this referral if a family member is affected by sudden, unexplained death. 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.

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.

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.