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 there are concerns that the the quality of care in the UK is declining. As other developed countries get better at preventing, recognising and treating life-threatening conditions in young babies, the UK, worryingly, appears to be getting worse. Since 2014 there has been an upward trend in the percentage of babies dying (1,2). Although a proportion of these deaths may be attributable to causes such as extreme prematurity where, sadly, survival after birth is very unlikely, the number of newborn baby deaths in the UK is still too high. According to the latest Each Baby Counts report (3), a shocking 72% of babies who were stillborn, died in their first week after birth or suffered severe brain injury could have had a different outcome with different care.
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 (4). 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 (5).
Every week in the UK, 39 babies who were born alive, die before they are 1 month old (1). Every day families are devastated, grieving parents go through overwhelming pain and suffering, often experience post traumatic stress symptoms and face a lifetime ahead of them without their longed for child.
Kit Tarka Foundation is working towards a world where preventable newborn baby deaths are a thing of the past.
What is it?
Neonatal herpes is a rare but devastating condition that can quickly lead to death or significant disability 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/birthing person or another individual in close contact with the baby. It is caused by two types of the herpes simplex virus, HSV-1 and HSV-2 which in adults or older children commonly cause infections such as cold sores, herpetic whitlow (herpes sores on fingers) or genital infections. 70% of the UK population carry one or two forms of this virus (7) but many of those people have no idea they are carriers as they have no symptoms at all. We are concerned that, despite its potentially lethal consequences, awareness of neonatal herpes amongst the public and healthcare professionals remains low and must be improved (8). For more information on transmission, recognition and treatment please see the information and advice page.
How common is it?
In the UK, the truthful answer to this question is we don't really know - but we need to to find out.
In the last published study from 2013 based in Nottingham, it is estimated that one baby dies every week in the UK from neonatal herpes (9). 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 (10) 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. Every year up to 8,500 babies worldwide are expected to die from the herpes virus (6) and, as the World Health Organisation recently acknowledged in a report supporting the argument for a vaccine (11), 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 the first project we have funded is research into the prevalence and impact in the UK.
NEONATAL HERPES INFORMATION AND ADVICE PAGE
In 2020 we published a new fully researched and referenced information page which is now one of the world's top resources for neonatal herpes. The information and advice is primarily aimed at expectant and new parents but it is also a very useful source of information for health professionals. We are now condensing this information into leaflets to be distributed to the general public and working with an illustrator to increase accessibility.
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.
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.
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.
Campaigning for nationally agreed guidance on which babies need empirical treatment for herpes i.e. which babies should start antiviral treatment immediately whilst waiting for the test results to come back (high index of suspicion).
Working with the NHS to:
Train health professionals in the recognition and treatment of neonatal herpes.
- Educate health professionals who work with pregnant people 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.
- 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)
Royal College of Obstetricians & Gynaecologists Each Baby Counts: 2019 progress report.
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
UK research study found 0 of 30 'on-call' Paediatric Speciality Registrars initially considered HSV in a 7 day old baby showing non-specific signs of sepsis
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