INTERIM UPDATE - JANUARY 2022
An interim analysis of the first 22 months (commencing July 2019) has now been published in the 2020/21 BPSU Annual Report (see pages 11-12). A more detailed analysis will be conducted on completion of the study.
The preliminary findings appear to show a significant increase in the incidence of neonatal HSV disease in the UK and Ireland compared with previous BPSU studies, as suspected. This early finding demonstrates the importance of undertaking this research.
Here are some of the key points:
80 cases of neonatal herpes were confirmed with follow-up questionnaires completed. Cases with incomplete questionnaires (45 pending) have not been included in this figure, meaning that the true number of cases is likely to be higher. 78 cases had sufficient data for analysis.
21 out of the 78 babies (27%) had disseminated HSV infection (infection of multiple organs). This is the most dangerous type of HSV infection, and 15 of these babies (71%) sadly died. 54% had infection in the central nervous system (the brain and spinal cord) which can lead to brain damage, and 3 of these babies (xx%) died. 19% had isolated infection of the skin, eyes or mouth.
Many babies did not have a fever, blisters or rash, or abnormal blood tests when they came to hospital. This is important because these are some of signs that medical professionals will normally look for when deciding whether or not a baby is unwell. The fact that some babies with herpes infections may not always show the typical signs means that it can be a difficult infection to detect, making it essential that the correct tests are performed.
In almost two thirds of cases, the source of the infection was unknown. In 27 cases (34%), the baby was thought to have caught the infection from their mother.
HSV SURVEILLANCE PROJECT
We are delighted to be co-funding the first UK wide neonatal herpes surveillance project to be published for 25 years. This is a key first project as it will quantify the scale of the problem in the UK which is currently unknown. We believe that once these results are available, the success of campaigning for awareness and change will be much greater.
Monitoring the prevalence and scale of herpes simplex virus disease in infants younger than 3 months
Herpes simplex (HSV) is a very common virus affecting about 70% of the UK population. It causes many different types of infections and illnesses in adults and children often just causing a cold sore. Neonatal HSV disease occurs when a baby is infected in their first few days or weeks of life. Babies can be infected if their mother has the infection during their pregnancy or delivery, or if an individual with the infection comes into very close contact with the baby in their first weeks of life. Neonatal HSV disease is rare but is devastating. Many of the babies affected will die or will suffer from long-term neurological problems.
Doctors try to reduce the number of babies who become sick from this disease by identifying those who are at greatest risk and taking steps to prevent them becoming infected, or by treating the babies very early in their illness if “typical” symptoms are present.
However at the moment they do not have enough information about the number of cases of this disease in the UK, which babies are most at risk, ways they might be able to reduce those risks, how and when treatment is being given and how often later relapses are occurring.
This study would provide that information and we hope could be used to identify areas of improvement in current practice and provide clarification for the development of guidelines, parental advice and junior doctor training, with the aim of achieving better outcomes for babies at risk of or with neonatal HSV disease.
Dr Katy Fidler, Consultant Paediatrician in Infectious Diseases, Brighton and Sussex Medical School and Royal Alexandra Children’s Hospital (RACH)
Professor Paul Heath, Professor of Paediatric Infectious Diseases, St Georges, University of London (SGUL)
This study is a collaboration between RACH and SGUL who have been granted approval to look at neonatal HSV via the British Paediatric Surveillance Unit (BPSU).
Start date and duration
3 year project commencing January 2019. Surveillance period July 2019 - July 2021 (inclusive). UPDATE: Surveillance period now extended for 6 months to January 2022 to take into account the impact of the Covid-19 pandemic.
Kit Tarka Foundation £14,000 (£5,000 via the Chalk Cliff Trust)
Rockinghorse Children's Charity £12,500