WHY WE ARE NEEDED
NEONATAL DEATH IN THE UK
The neonatal period refers to the first 28 days of life of a newborn baby. Every day in the UK and across the world, there are preventable neonatal deaths and, as is well documented, the quality of neonatal care in the UK is slipping. As other developed countries get better at preventing, recognising and treating life-threatening conditions in new babies, the UK, shockingly, is getting worse. Sadly, since 2014 there has been an upward trend in the percentage of babies dying (1,2).
The UK is slipping down the tables compared with the rest of Europe and indeed the world. In 1990, out of all 28 European Union countries ranked in order of the lowest to highest probability of a baby dying in the first 28 days of life, the UK was 7th: today it is 19th (3). The UK has made less progress than all other EU countries with the exception of Germany and France.
According to a recent UNICEF report, a baby born in the UK is more likely to die in its first month than a baby born in Cuba or Latvia, nearly twice as likely than a baby born in Slovenia and nearly three times as likely than a baby born in Japan (4).
What is it?
Neonatal herpes is a devastating virus which can ravage a new baby's body in a matter of days and, even if treated, can cause death or long term health problems such as brain damage or cerebral palsy. It is caused by the herpes simplex virus which can be transmitted before, during or after birth from the mother or another individual in close contact with the baby. It can be caused by HSV1 which most commonly causes cold sores in adults and HSV2 which most commonly causes genital herpes. 70% of the UK population carry one or two forms of this virus (6) but many of those people have no idea they are carriers as they have no symptoms at all. Given how common herpes is, it is very concerning that, in our experience, the vast majority of both the public and medical profession are unaware of how dangerous it can be for a baby. For more information on transmission, recognition and treatment please see the information & resources page.
How common is it?
The truthful answer to this question is we don't really know - but we need to to find out.
According to the last published study from 2013 based in Nottingham, at least one baby dies every week in the UK from neonatal herpes (7). This is the latest estimate of the number of mortalities in the UK but it is only an estimate. The last UK wide published study based on actual cases uses data over 25 years old (8) so the need for an-up-date study is glaring.
This is against a backdrop of reports from across the world indicating that neonatal herpes is no longer as rare as it was and, as the World Health Organisation recently acknowledged in a report supporting the argument for a vaccine (9), it is clear that there is not enough research into the prevalence of neonatal herpes worldwide.
We believe that until the true scope of the problem is known, the success of campaigning for awareness and change will be limited so our first research project will be into the prevalence and impact in the UK.
We are looking for academics to carry out a full systematic review into the current research focussing on the prevalence, recognition and treatment of neonatal herpes.
RESEARCH INTO THE PREVALENCE OF NEONATAL HERPES
We are delighted that we have already raised enough funds to finance, with the help of Rockinghorse Children's Charity and the Chalk Cliff Trust, the first full research project into neonatal herpes for over 25 years. This surveillance project is monitoring the number of infections and mortalities from neonatal herpes in the whole of the UK and Ireland over 2 years and is being led jointly by Dr Katy Fidler of the Royal Alexandra Children's Hospital and Professor Paul Heath of St George's University of London Hospital. The British Paediatric Surveillance Unit are facilitating this research and it is now underway. There will also be a programme of education and training alongside the project to be initially trialled in Sussex. The project commenced in January 2019 with surveillance from June 2019. The total project cost is £26,500 of which £5,000 is being funded by the Chalk Cliff Trust and £12,500 by Rockinghorse Children's Charity. More details can be found here.
These are the longer term projects we are currently fundraising for and considering:
Campaigning for neonatal herpes to become a reportable/notifiable disease in the UK so that it is monitored more carefully.
Working with the NHS to:
Train medical professionals in the recognition and treatment of neonatal herpes.
- Train medical staff who work with pregnant mothers or newborn babies on the dangers of working with a cold sore or herpetic whitlow (cold sore on the fingers).
- Change hospital policies nationwide to ensure cold sores are never seen on neonatal wards.
- Ensure best practice is followed nationwide in treating all babies presenting with the indistinct symptoms of neonatal herpes, i.e. ensuring all are tested and treated with antivirals immediately (high index of suspicion).
- Produce public information leaflets & posters for distribution nationwide.
Collaborating with other established organisations to help fund other areas of herpes research such as potential vaccines or impact/cost vs benefit analysis of administering preventative antivirals to at risk parents.
Funding research into other causes of neonatal death, on application and in collaboration with other established organisations.
Please get in touch if you think you, or one of your contacts, can help with any of these projects.
Total neonatal deaths recorded in the UK in 2018 was 2,028 based on data from the Office for National Statistics
In the UK: In 2018, there were 2.77 neonatal deaths per 1,000 births; in 2017, there were 2.82 neonatal deaths per 1,000 births; in 2016 there were 2.76 per 1,000 births; in 2015 there were 2.72 per 1,000 births; based on data from the above(1)
ONS article: UK drops in European child mortality rankings
UNICEF report: Every child alive: The urgent need to end newborn deaths
BASHH: 70% of the UK population are infected with HSV1 or HSV2 by the time they are 25 years old
Nottingham based study found 17.5:100,000 babies were infected with HSV and over half of these die which leads to an estimated 66 babies dying per annum in the UK
The last published full British study into incidence rates was based on data collected from 1986-1991