Neonatal herpes is a rare, and potentially fatal, disease which usually occurs in the first four weeks of a baby's life. It is caused by the same virus that causes cold sores and genital infections – the herpes simplex virus (HSV). Early recognition and treatment has been shown to significantly improve babies' chances of making a full recovery.
In the first of a series of blogs, Sarah de Malplaquet, Chief Executive and Founder of the Kit Tarka Foundation, explains why they are joint-funding new research into neonatal herpes, and how the findings could help save many lives.
My son, Kit
I set up Kit Tarka Foundation after the preventable death of my beautiful son Kit to neonatal herpes when he was just 13 days old. I say preventable as he was born healthy at full term, contracted the virus in hospital postnatally and was under almost continuous medical care for his whole life. Yet herpes was never treated for. It was not even suspected until he was in an induced coma in intensive care on his 12th day fighting for his life; but by that stage it was too late – the doctors were just doing everything they could to keep him alive.
Neonatal herpes wasn’t considered
An HSV1 diagnosis came back the day after he died. The antibiotics Kit had been pumped full of for his entire life had done nothing; he never received the antivirals he had needed to save his life. On receiving Kit’s diagnosis, the doctor looking after him when he was getting sicker and sicker said he was ‘kicking himself’ as he had not even considered HSV.
After Kit died I set out to find out as much as possible about this devastating virus – I wanted to know how a very experienced and capable doctor could not think of HSV when so many other diagnoses were considered and tested for. The only answer that kept coming back from health professionals involved in Kit’s care was that it is incredibly rare and Kit was just unlucky. But I wanted to know exactly how rare. I wanted to know how rare a disease must be before it is not included in a doctor’s training, how rare it must be before it is not explicitly tested for and how rare it must be before it doesn’t even get a mention in hospital guidelines.
Searching for data
As a newcomer to this area, I was very surprised that nobody could tell me how many babies were currently dying in the UK from an HSV infection. I naïvely thought a doctor would be able to look it up, or I could find it myself on a database, or I could send an email to the Office for National Statistics. However, nobody I contacted could tell me what I wanted to know.
The figure I found referenced several times was that HSV affects 1.65/100,000 babies in the UK every year and 58% of those babies die.1 Using 2019 birth figures2 this would mean 12 babies are infected and 7 babies die. However, it turned out these figures came from a very old 1986-91 British Paediatric Surveillance Unit (BPSU) study. This was the last UK-wide published research available at the time I was looking.3 So people were still quoting figures over 25 years out of date and using that as a basis for their guidelines – or lack of. I then found a Nottingham-based research study led by Dr Dush Batra4 which gave an infection rate of 17.5/100,000 babies and mortality rate of 47% which, using 2019 birth figures again, means 124 babies infected and 59 dying – 10 times the rates of the earlier BPSU study and more babies dying every year than from Group B Strep which is routinely tested for in sick babies. So, either rates had increased significantly since 1991 or Nottingham had unusually high numbers.
A new UK-wide study was urgently needed
With all other enquiries into current infection rates leading to dead ends, it was clear that a new UK-wide study was needed. We couldn’t find any other charity able to help us so it seemed the only way this research would happen was if we funded it ourselves – so Kit Tarka Foundation was established in 2018. We started fundraising immediately with a programme of public events including a sponsored walk and a one-day music festival and were delighted that within our first few months and with the most incredible support from friends and family we had raised enough money to co-fund a new BPSU surveillance study5 which commenced in 2019 and is ongoing. The study is being led by Dr Katy Fidler at the Royal Alexandra Children’s Hospital, Brighton, and Professor Paul Heath at St Georges Hospital, London, who had wanted to carry out this work for some time but had not been able to secure funding. The co-funder is Rockinghorse Children’s Charity.
Initial findings are significant
The results are due to be published in 2022 but 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:
- 47 cases of neonatal herpes were confirmed with follow-up questionnaires completed. Cases with incomplete questionnaires have not been included in this figure, meaning that the true number of cases is probably even higher.
- 20 out of the 47 babies (43%) had disseminated HSV infection (infection of multiple organs). This is the most dangerous type of HSV infection, and 13 of these babies (65%) sadly died. 23% had infection in the central nervous system (the brain and spinal cord) which can lead to brain damage and 34% had isolated infection of the skin, eyes or mouth.
- A number of babies did not have a fever, blisters or rash, or abnormal blood tests when they came to hospital.6 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 16 cases (34%), the baby was thought to have caught the infection from their mother.
It is important to note that the figures reported are very likely to be an underestimate as not all questionnaires had been completed fully and not all babies who died from HSV will have been tested for it. As Dr Batra notes, if a baby dies from herpes but the team has not thought about it as a potential cause then it will not come to light and the death may be incorrectly reported as ‘culture negative sepsis’.
Using the data to inform safer care
Full results are due to be published in 2022 and we hope this will lead to new national guidance being issued, all Trusts ensuring their treatment guidelines include neonatal herpes and all doctors receiving appropriate training.
Many babies’ lives could be saved every year from an increase in awareness of neonatal herpes but if our efforts mean just one family is spared the agony, trauma, heartbreak, grief and lifetime of PTSD symptoms and anxiety that watching your baby die can lead to, it will all be worth it.
Sarah de Malplaquet
More information and advice can be found at:
- Website: kittarkafoundation.org
- Twitter: @KitTarka
- Neonatal herpes information and advice page
- Research study detail
More in this blog series:
- The devastating consequences of a missed neonatal herpes diagnosis
- Neonatal herpes: Why healthcare staff with cold sores should not be working with new babies
References and footnotes
- Tookey P and Peckham CS. Neonatal herpes simplex virus infection in the British Isles. Paediatric and Perinatal Epidemiology, 1996; 10: 432Ð442.
- Office for National Statistics, 2019. Vital statistics in the UK: births, deaths and marriages.
- Tookey P, Mahdavi S, Peckham CS, Surveillance of neonatal herpes in the British Idles 2004-2006 (version 1; awaiting peer review), 2020.
- Batra D, Davies P, Manktelow BN et al. The incidence and presentation of neonatal herpes in a single UK tertiary centre, 2006-2013. Archives of Disease in Childhood: Education and Practice Edition, 2014; 99(10) 916-921
- Interim results summarised at kittarkafoundation.org/current-projects and published in the 2019-20 BPSU annual report.
- 87% did not have a fever and 56% had a normal C-reactive protein (blood test to check for inflammation and infection) when they came to hospital. Only 45% of babies with disseminated herpes infections had typical skin lesions (blisters or a rash).