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).
In this blog, Sarah de Malplaquet, Chief Executive and Founder of the Kit Tarka Foundation, draws on her own devastating experience of her son dying to illustrate why healthcare staff with cold sores must stay away from new babies. Sarah highlights the lack of awareness of the dangers and calls for a widespread review of policy in order to prevent future deaths.
Kit Tarka, my beautiful baby boy, was born healthy but admitted into special care shortly after birth. He died from the herpes virus (HSV-1) at just 13 days old.
Herpes was not suspected in Kit until he arrived, extremely unwell, at the neonatal intensive care unit and someone asked if my partner James or I had had a cold sore recently. I had never had one in my life and my James hadn’t for many years.
But by then it was too late. Kit never received the antivirals he needed to save his life. A diagnosis of herpes wasn’t confirmed until the day after he died.
Devastated by Kit’s death and shocked by the diagnosis, we needed to understand how this had happened.
I found out that herpes in a baby is usually transmitted from the mother during a vaginal birth, but Kit had been born by caesarean section so this couldn’t have happened. I still wanted to know if I was a carrier of the virus and could have unknowingly passed it to Kit another way.
My nipples had become blistered several days after Kit was born and at the time dismissed as friction from the breast pump or thrush, so I arranged to have a blood test and swab taken.
My GP very kindly volunteered to visit me at home to take the samples. My blood was negative for HSV-1 and HSV-2 but the swabs were positive for HSV-1. Subsequently we have been told that this indicated a new infection in the breasts which had not yet reached my blood and was most likely passed to me from Kit as we started to establish breastfeeding.
Still at a loss as to how Kit had caught herpes, we started looking at other possibilities through researching online and contacting experts. We considered the possibility of James passing the virus to Kit but again that seemed incredibly unlikely as he had not had a cold sore in many years and had not passed the virus to me in all our years of intimacy.
Could Kit have caught herpes from a healthcare professional?
It became clear that the most likely scenario was transmission from a healthcare worker. One of the midwives, nurses or doctors caring for Kit had perhaps touched a cold sore then touched Kit’s nose, eyes, mouth or broken skin. We asked the hospital to speak to everyone who had cared for Kit about recent cold sores, and they agreed to do so.
It felt so incredibly important to us to know how Kit had contracted the virus in order for us to come to terms with his death. We didn’t want names or to apportion blame, we just wanted to know what had happened and to prevent it happening to other babies.
Sadly, although the hospital had informed us they were in the process of interviewing all staff, it came to light that this never happened and, despite our plea for them to stick to their original promise, they refused to do so.
So, although we will never know exactly how Kit caught his infection although we are fairly certain it was from a healthcare worker. Sometimes I have flashbacks of seeing neonatal nurses eating from a shared box of chocolates in the special care baby unit at the end of a premature baby’s incubator and can’t help but think how easy it would be to transfer the virus unwittingly.
Policy change is needed to prevent future deaths
There were many other areas where a lack of awareness of neonatal herpes contributed to his untimely death so, armed with the knowledge I now had which I knew could save future babies, I founded Kit Tarka Foundation with a mission to prevent newborn baby deaths.
One of our aims is to make sure all hospitals have a policy that healthcare workers with cold sores should not be working clinically. We have been fortunate enough to have the support of the All Party Parliamentary Group on Premature and Sick Babies, chaired by David Linden MP whose office has written to every Trust in the UK to find out their current cold sore policy.
Although many responses are yet to be received, it is striking that much work needs to be done in this area. Of the 242 Trusts written to, 49 have responded so far but only 8 (16%) say they have an infection control policy which explicitly states that healthcare workers must not work clinically with an active cold sore.
We are disappointed but not surprised by these figures as we have spoken to many midwives and nurses who had no idea of the dangers of working with a cold sore. We are very aware of the staffing issues that implementing this policy could lead to but surely keeping a baby free from HSV infection and potentially saving their life as a result should be a top priority.
Information for families and healthcare staff
If you are a parent or healthcare worker and would like more information about neonatal herpes, please visit the Kit Tarka Foundation website where you’ll find our advice page and details of our research project.
Previous blogs in this series:
- Neonatal herpes – more common than you think?
- The devastating consequences of a missed neonatal herpes diagnosis.
Sarah de Malplaquet