Resource Highlights: Herpes Simplex Virus

RCPCH The paeds round
Neonatal herpes simplex virus disease – THANKS (think hands and no kisses) Transcript of podcast – October 2023

[music, with snippets]

Emma: Us not being open and talking about herpes so that we can do something about it, have all led to this awful tragedy that is part of your family history.

Sarah: Don't let anyone hold your baby without washing their hands, and, and don't let anyone other than the parents kiss your baby.

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Emma: Let’s get down to rounds. Hello, my name is Emma Lim and I’m a consultant paediatrician at the Great North Hospital, and I would like to welcome you to The paeds round, your regular podcast from the Royal College of Paediatrics and Child Health

Emma: So Sarah, well welcome today and it's really lovely to speak to you. Would you just like to introduce yourself and tell us why you're here?

Sarah: Yep. I'm Sarah de Malplaquet. I'm the CEO and founder of Kit Tarka Foundation, which is a charity I started after the preventable death of my son Kit when he was 13 days old. Um, and he died from neonatal herpes.

Emma: First of all, Sarah, I just want to thank you for coming because to do what you did to start a foundation and to continually talk about what must be one of the most distracting things to ever happen to a mother is, is just so hard. If we go about how many years ago was this now?

Sarah: So he died in September, 2017, so he should be five now.

Emma: And how did you feel when you were pregnant with your first child?

Sarah: Um, absolutely over the moon. So we were really lucky. Um, and yeah, the pregnancy was pretty smooth. I mean, the usual like aches and pains and heartburn, but absolutely no concerns throughout the whole pregnancy until the very end.

Emma: And when was it that you had some inkling that things weren't quite right?

Sarah: when I was around 39 weeks, I actually got a rash on my fingers. Um, And this was actually a red herring that because I had a rash, I was taken into hospital and tested for, um, icp, cuz it was like an itchy rash. It actually turned out to be pom, it's, it called conflicts the, um, eczema. So that was a complete red herring. But because I was in hospital and my blood pressure was checked as a matter of course, and it was found to be high. Um, and that's when kind of alarm bells ring for the doctors. I mean, I'm absolutely convinced it was the white coat syndrome and However, once I was on that kind of intervention train, um, Because it was so close to the end of my pregnancy, I was kept in hospital and an induction was recommended.

Emma: So you'd had this wonderful pregnancy. It was your dream. It had all come really quickly and nothing had gone wrong, right till the end where you had a little rash, you got admitted and was found to have high blood pressure, which you reckon was seeing doctors and being in hospital.

And from that point on, it all became quite medicalized and you were booked for an induction. Do you want to tell us what happened next?

Sarah: Yes. So the planned home birth I wanted was out of the window. Um, absolutely devastated, but obviously wanted to follow what was right. And obviously it was a, the pre-eclampsia risk that, um, doctors were concerned about. I was really, really terrified because all I'd heard from friends who had had inductions were absolute horror stories.

And that went ahead with it had a PEs, the Pessie. Um, but within an hour or so, I started getting contractions and they were absolutely, unbelievably painful. Um, and they didn't stop.

And on top of that, I had a reaction to the PEs. So the insides of my vagina were incredibly, incredibly, like sore and painful. So any. Investigations down below were agony. But I wasn't really dilating at all at this point. I mean, to me, my body just wasn't ready to give birth.

Um, and probably the fat that I was so tense didn't help either. Um, anyway, we cont continued for a few hours. So, however, during this time, kit was being monitored. Um, and at first was, was thought to be okay. Um, but then there were some concerns around Kit. So at that stage it was suddenly category one cesarean section, and I was rushed into the operating theater

But Kit was born and he was born healthy and he was absolutely perfect, sweetest, sweetest little boy. Um, started crying straight away, had his AGPAR test and scored 10 out of 10. No concerns at all. Um, was given to me and James were doing skin on skin. And it was all like, I mean, I'll say it was all amazing, but it was, it wasn't because I was still in agony and it was, um, the exact opposite of the birth that I had planned.

And, but still we had our son and he was amazing. Um, and we thought that was the end of the nightmare. Um, and his blood sugar was found to be too low.

Um, and also at this stage he was a little bit cold as well. So there, there was some attempts to try and bring it back up. However, it was decided that he was at risk at this stage of getting ill. So he was taken into the special care baby unit.

Emma: So Sarah, You'd been through this awful birth, which was the exact opposite of everything you'd hoped for, which was a nice home birth. But as you said, you had the boy of your dreams, you were, it was everything. Seeing Kit. Had you thought what might happen after your baby had been born and had you ever considered that your baby might not be Well?

Sarah: Um, it just didn't cross my mind. And also, I guess at that stage we had met Kit and he looked like a very healthy, happy. He almost looked like he was smiling in the, his first couple of hours.

Um, he looked like a healthy baby. So even when he was taken into special care, I didn't think he was ill. And actually I was just desperate to get him home. Um, I went along with it, but till now I wish I hadn't. I wish I'd just taken him home and he might have still been here today.

Emma: So is this bit, you've been through this hellish labour, but you've got your baby, he's amazing and he just has slightly low blood sugars and he is gone to the special care baby unit and all you want is to have him back. What happened next?

Sarah: So he was taken upstairs. I was physically unable at that stage to go with him. I couldn't move. Um, so we decided James should go up with him, my partner. Um, and I was downstairs and that was absolute torment. I felt like he had been taken away from me. It really felt like that, like almost against my will, although of course it wasn't against my will.

We'd given consent, et cetera. But it felt like my son had been taken away. Um, and it was a, it was, wasn't until another few hours that I think James managed to get a wheelchair, managed to put me in the wheelchair and take me up to see Kit and pretty sure I was crying for most of those hours. Just so sad that after everything we'd been through and then for this to happen.

Um, and also I was kind of, yeah, pretty sure that he wasn't ill. I just really wanted him home.

Emma: And you were right because, um, they gave him some feeds and then he came back down to you a bit later, didn't.

Sarah: He did. It took six days. So although he had a trip downstairs still whilst he was in the special care unit, he was a, he was taken downstairs to see me at some, at one point when again, I wasn't well enough to go upstairs.

Um, and it was during that time where there were red flags that we now see as red flags, but at the time we didn't know. So kind of from day three, four, um, he was really, really sleepy. So he wasn't waking up for feeds.

I think he only woke up for about 20 minutes a. . Um, I was asked, I asked doctors, nurses, midwives, like, is this normal? You know, everything you hear about newborn babies is that they hardly ever sleep. They cry all the time. And Kit was hardly crying. Barely at all actually.

Um, and I was just told that he was a sleepy baby. Some babies are sleepier than others. Um, boys are sleepier than girls. Maybe it's because I'm allergic to codeine, so I'd have morphine at the birth. So maybe it was a after effects of morphine in my breast milk cuz I was at this stage trying to breastfeed him, but also pumping milk for the, um, bottle feeds.

Um, maybe it was that he was having too much milk because they're trying to get his blood sugar up. , there were all these reasons given, and I, I know my Google search history at the time is just like, how much should baby sleep? Why is my baby not waking up? Et cetera, et cetera. Um, but I was reassured that that is normal.

Emma: So Sarah, you told me that even though Kit was upstairs on the special care baby unit, you were worried that something wasn't right because he was sleepy and he was hardly crying and you even described how he didn't cry with painful stimuli.

Sarah: Yes. Yeah. So that was another thing that we were asking about. I mean, I think at this stage I wasn't necessarily worried. I was asking the questions, but because I was told it was normal and there was nothing to worry about, it was kind of Oh, okay. Even though that didn't, it didn't feel right.

We were consistently told that it was fine. he didn't respond to pain at all. So he didn't wake up often. He didn't wake up for the heel pricks that he was having, what feels like thousands of, um, and even when his cannula was, were being inserted, he didn't respond at all.

And, and I remember talking to James and talking to one of the nurses about it, like, why, why is he not responding?

Emma: So you are telling me that when somebody put an intravenous cannula, so uh, a line into his vein to give fluids, he didn't wake up and he didn't cry.

Sarah: Yeah. Correct. So if he, if he was awake at the time, which was rare, he. He didn't cry. Um, didn't wim her, didn't yeah, didn't flinch. Which we, we thought was unusual, um, but we're told it was normal.

Christo: Sarah, at this point, um, what communication, uh, had happened between you and either kind of midwives or the nurses and doctors on the special care baby unit to explain, um, because by this stage he'd been up on the unit for a few days, is that right?

Sarah: Yeah, so at this stage it was just a case of he, this is very normal for even full term babies born by caesarean.

Um, he's just taking a little bit longer to get stabilized. Um, we're being extra cautious to make sure he's okay. Um, and it wasn't until he was six days where they were happy enough with all the observations that he could then get discharged to the postnatal ward.

Emma: And you did manage to get your son home, didn't you?

Sarah: Yes. So he was down with us on the postnatal ward, um, on day six, I should say. This was pre covid, so thankfully I was in the whole time cuz I was still quite poorly. But James could stay with me

So we, we we're absolutely delighted to get kit back to the postnatal ward. He fed quite well, breast fed quite well on his first night there. Um, but the next day there were some concerns about whether he had jaundice or not.

So he was put under that special light, um, but that stabilized quite quickly and he was actually allowed home on his seventh day.

Emma: And how did it feel to get him home?

Sarah: Um, it was really mixed feelings. I was, we were absolutely so happy to have him home. Um, but at the same time, I was desperate to establish breastfeeding and it wasn't happening and I was in agony and. And that's, I think that that just felt like the only way I could help him at that stage, and I wasn't able to do that.

Emma: Why was it so painful to breastfeed? So with something else that worried you then wasn't there?

Sarah: Yeah, so I think it was about day four or five when I started getting blisters on my nipples from one of them particularly.

Um, and at the time I raised this with the midwife and also one of the neonatal nurses, and she got one of the breastfeeding specialists to come and speak to. Um, and at that point the blisters were thought to be as a result of using the wrong size like breastfeeding found.

Um, I was googling as usual, suspected flush. It was tested for flush, um, found not to be flush. Um, and what we now think is, you know, that's, that was a sign of HSV that perhaps kicked had transferred to me, and that was one of the signs that wasn't picked up.

Emma: So Sarah, these blisters, they were very painful, weren't they?

Sarah: Yeah, really painful. So it was, it made. Expressing milk. Really difficult, very challenging.

Emma: And how did they develop or heal?

Sarah: it just started as like red soreness, which I guess is expected with breastfeeding. Um, and then it was only a bit later that I noticed some blisters.

Emma: Um, and just at this point, having saw nipples when you start breastfeeding, I think that's really common.

But having blisters is quite unusual. And you'd never had blisters before and you'd never had cold ulcers either had.

Sarah: No, I've never had colds in my life or blisters anywhere that I can remember.

Emma: Yes. You, you, I know this is a bit personal, but you've not had genital herpes either.

Sarah: No, absolutely not.

Emma: Did you think it was anything else at the

Sarah: time? Uh, I didn't know what it was. I, I, I took what I was told to be the truth.

Emma: So we'll come back to those funny blisters a bit later. But meanwhile, you've been struggling to breastfeed.

It's been agony. Kit has got home, but he's still sleepy. But things weren't right. .

Sarah: Yeah. So after we got home and kind of announced his birth to the world, which we hadn't felt comfortable doing until then

Um, but we did, and then it was that first night where Kit just didn't really wake up at all. you know, we had our instructions about he has to take this much meal every two hours. I think it was at the time. Um, because Kit had been so sleepy, we'd been given techniques to wake him up, like strip off his baby, Glu grow, um, blow on his face, tickle his toes, but none of these things were working.

And he had hardly any milk at all that first night. And then the community midwife came round the next day for her, like day one visit. and I told her about my concerns and at this point he started to look a bit more yellow again. So I showed her a photo of him the night before and him that day, and she agreed that he did look a bit more yellow.

Um, she said in every other respect, he seems like a healthy baby. His tone is really good. Um, he looks really well, but she agreed he does look a bit more yellow. Um, so she recommended then that we take him back to the children's hospital to check again for jaundice, and she thought that the jaundice might be the cause of his tiredness.

Emma: just as you think that you're ready to get the congratulations and that your baby is back home with you, he seems more unwell and jaundice and sleepy, and you take him back to hospital. And what happened next?

Sarah: So we got to the hospital and saw a doctor really quickly. Um, and that doctor immediately recognized something in Kit that he was a poorly baby, um, and admitted him straight away and he was put back on antibiotics and his infection markers were high. Um, within a few hours, his care was escalated to the higher dependency unit in the children's hospital. Um, and he was, you attached to all the wires. Um, and he remained there for the next five days until he was 12 days old.

Christo: How did it feel, Sarah, to go from, uh, having your delivery and the first few days of Kit's, life being very medicalized to then going home, uh, and then to be thrown back into, um, another very medical and clinical, uh, situation with, um, high dependency care?

Sarah: Um, getting home was so nice. , I was just, from the minute I was admitted to hospital, I was desperate to get home and then subsequently to get Kit home. And then to go back, I, when I went back, I thought it would just be, he would just be under the lights for a little bit longer and then he would, we would have him home again.

But when he was admitted, yeah, it was like all our nightmares come true. Really. And just absolutely devastated to be back there.

Emma: So Sarah, you talk about how you've been at home and you've just been a bit sleepy and not feeding and you come back in thinking perhaps you'll just need the lights. But in fact, he needs antibiotics, he needs fluids. He's on the high dependency unit. Does anybody know at this point, what's the matter with kit?

Sarah: Lots of tests were done. So he had a lumber puncture. Um, There were various theories, like maybe it's a metabolic condition, maybe he's allergic to my breast milk. Cuz they, there seemed to be a pattern there, um, I guess all the usual tests that at no point was Hs feet suspected or tested for.

Emma: So Kit is now seriously unwell and he is getting a lot of treatments, but he is not getting better, is he?

Sarah: So at this stage, the doctors were still telling us that we would be home in, it was days and then it was weeks, but it was, we will be home soon and this will just feel like a bad dream. It was a difficult start to Kit’s life, but we'll have our little boy in our arm soon enough at home.

Christo: When you were speaking with the doctors and they were trying to find out more information about what might have led kit to be unwell, did they ask questions about your health, so about infections prior to delivery, or about any warning signs that with retrospect might have related to hsv?

Sarah: No, they didn't ask anything.

Um, so the, the, the big warning sign that was we there, which I've already talked about, is the blisters on my nipples, and they were well aware of these. In fact, James, who was my champion, was fighting for me to be seen by anybody because I was in so much agony from these blisters. Um, but they were never connected to kits, welfare kits, health.

Emma: So at this point, you and Anny, you've still got these funny blisters around your nipples and kits, despite everything that is being done for him is not getting any better.

How did things change from there on?

Sarah: So on his 12th day, it was by this stage he was having seizures, um, struggling to breathe grunting, which is the medical term for what we just thought as he just sounds like he's in a lot of pain.

But then he just start, he did start to look really unwell and really sad to be honest. . Um, so yeah, when he was 12 days and he was having all these uh, deterioration, they decided that he needed to be taken to the intensive care unit at the Alina.

So he was put in an induced coma and he was rushed up to the hospital there. And

Emma: How did that feel?

Sarah: So that was really difficult. That was the first time anyone had mentioned that your son might die. So that was an absolute shock.

We had to go behind kits in the car cause there wasn't room for two of us in the ambulance. Um, that alone was really difficult because Kit had always had one of us by his side until that point, except for his lumber puncture, and that was the only point that he hadn't had a parent by his side.

Emma: So you described Sarah, how, um, this is the first time you suddenly think, actually Kit is seriously ill and he may not survive, but so far nobody really knows what's wrong. Did they have some ideas when you got to the Alina Children's Hospital, which is in London?

Sarah: Yes. So when we first got there, one of the first things a doctor said to us was, have either of you had a cold?

So recently, because I suspect this could be herpes infection. So he sees several, often tragic, usually tragic cases by the time they get to him, um, a year. So Hal Kip presented that kind of overwhelming infection. Uh, the, he'd had, I think he had liver failure. So I think that was a warning sign for the doctor.

Um, and that was the very first time that we had heard the word herpes and were like quite shocked to be honest.

Emma: And what was your first thought when you were told he might have herpes?

Sarah: Um, I've never had a cold saw in my life.

We kind of moved on like I did Google it, but. We kind of dismissed that as it wasn't the cause at that stage, I think.

Emma: And things didn't go as you hoped. Kit didn't get better.

Sarah: Um, no. So by the time he was admitted into intensive care, they were just doing all they could to save his life.

They did send his blood off to be tested for various things, including H S V, but they knew that even if it was H S V at this stage, like they, it's too late to be just starting antivirals.
They needed to stabilise him first. Um, and it seemed like they had stabilized him, um, and recommended that we go downstairs and try and try and get some sleep

and then we got a phone call saying, you need to come upstairs. And so we did. We kind of knew what we were gonna find, I think, at that stage. Um, and we found a doctor desperately giving CPR ticket to try and bring him back to live. Um, but it didn't work.

And he, yeah, he, he died shortly afterwards.

Emma: Sarah, I'm so sorry. This must be so hard for you to talk about this. I think the thing that makes it so difficult is that horrible, inevitable feel that things are getting worse and you still don't know why at this point. Did they ever find out?

Sarah: Yes. After he died, We held him for a little bit, but by that point he didn't feel like kiss anymore.

I remember saying to James like, this isn't our little boy. He was really swollen. Kit was so like delicate and perfect, He, he just didn't look like him anymore and he had died so he didn't feel like our boy anymore. Um, we were taken home shortly afterwards, so we had to leave kit there.

Um, and we got a knock on our door of a couple of hours after we got home. A pair of police officers because at this stage it's an unexplained child death. Um, so officially we are suspects, I guess, and I absolutely don't fault that system. That's what should happen in a circumstance like this, but it was an extra.

Kicking the teeth to us. Um, they interviewed us. Um, left still had no answers. And it was not until the next day the police officers came back. They'd heard from the hospital that he had a diagnosis of H S V one, um, and that was what was gonna be put down as a cause of death. So the HSV had caused the organ failure, um, because it was a disseminated herpes version.

Emma: So Kit had died of type one herpes sinex virus, the virus. That gives people simple common colds.

Separate quote: we would ask any clinician working with newborn babies to not work clinically if you have a cold sore.

Emma: Uh, thank you Sarah. This is a terrible story and outta that terrible story, you've actually done amazing things, which is start a charity in Kit's name that champions working with hospitals and foundations around herpes simplex for the Kit Tarka Foundation.

Do you want to tell us a bit about it

Sarah: I did speak to a number of larger charities to see if they would help with what at the time was an obvious gap in the research. So the latest, the latest BPSU study that had been published at that time was 25 years old. There was an interim, interim one, which hadn't, I think it only got published a couple of years ago.

Emma: So Sarah, once you'd started thinking about it, you actually found there was a big gap in the knowledge around herpes simplex and how it affects babies. So there wasn't any recent research or studies, there wasn't much for public awareness and there wasn't enough for clinicians to be aware of what they should look out for

Sarah: Um, obviously there was a huge gap there amongst health professionals, doctors, um, on that side, what to look out for in babies, that kind of non-specific signs.

It's not always a bacterial infection. It could be a viral infection. Um, and on the other side, there was a huge gap in knowledge amongst parents.

Emma: That's amazing. And I think you're so right. I think viruses are really neglected and you've done more than that because you've also done a public awareness campaign called Thank. Haven't you, do you want to tell us a bit about that?

Sarah: Uh, yeah, so off the back of that survey we launched the Thanks campaign, which is Think Hands and no Kisses. Um, so it's all around the importance of good hygiene around newborns. Um, a lot of parents told us that although they let other people kiss their baby and don't wash their hands, they're not comfortable with it and that they don't want to be seen as overprotective parents or they feel awkward having these conversations. So we produce all these resources, posters, um, postcards, et cetera, and social media campaigns who kind of empower parents to make those decisions for their vulnerable newborns.

Emma: have you got three top tips or three top messages that you would like new parents to know?

Sarah: Um, don't let anyone with a cold sore near your baby. Don't let anyone hold your baby without washing their hands, and, and don't let anyone other than the parents kiss your baby.

And this might be number four, but anyway. Any expectant parents. If you have any known history of genital herpes, then please, please, please talk to your, um, midwife about it or your obstetrician. Um, don't be embarrassed. 25% of the population have genital herpes infections. Um, and we know that's actually is the most common way that babies contract HSV.

Emma:. This is such a tragic story and I think that your message of parents not knowing what is the right thing to do as in washing your hands and not exposing your baby's cold source, and clinicians not recognizing these nonspecific symptoms and treating it early and thinking about hsv herpes simplex virus, and.

Us not being open and talking about herpes so that we can do something about it, have all led to this awful tragedy that is part of your family history.

Sarah: Um, another thing that really surprised us from our survey was that only 15% of our respondents were us during pregnancy about previous genital herpes infections.

Um, I'm nearly 50% of birthing per appearance with a known genital herpes infection said it was not discussed at all during, with a health professional during pregnancy.

Emma: And that survey led you to lobby and change a whole lot of things, didn't it?

Sarah: Yeah, so one of the main changes that's come out of that is the nice antenatal guidance We, um, campaigned for that to now include information on herpes to be given to all expectant parents, and that's in there now, which is brilliant.

Emma: So Sarah, it's been a tremendous privilege to talk to you and to hear your story and hear about Kit, and I think that you need to reflect that it's, you one person has changed so much. You've changed the way clinicians think, you've changed how parents think, and you've changed policy at a national level, which is an incredible achievement for any one person.

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This podcast is a collaboration between Medisense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

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Katy: We can treat it if we know early enough.

Emma: There is such a stigma about herpes simplex virus.

Katy: Your result is only as good as the swab you take.

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Emma: Hello, welcome to The Paeds Rounds. We host a regular podcast from the Royal College of Paediatrics and Child Health on key issues affecting paediatric practice. My name is Emma Lin and I'm a consultant paediatrician at the Great North Children's Hospital in Newcastle upon Tyne. I'm here today with my co-host and colleague, Christo Tsilifis, and this is our final episode of three on herpes simplex virus (HSV) and today we're looking to round up our learning from what we've heard before, from Sarah and Dr Hermione Lyall.

So, let's get started with today's round and hear from Dr Katy Fidler, a great friend and colleague of mine who I've known for a very long time. Katy, would you like to introduce yourself?

Katy: Hi, Emma. I'm Katy Fidler, I'm a paediatric infectious disease consultant in Brighton and a reader at Brighton and Sussex Medical School. And, also I currently run the national study on neonatal herpes through the BPSU (British Paediatric Surveillance Unit).

Emma: Katie, what do you want to tell doctors about when to worry about HSV and what to look out?

Katy: Well, and the neonatal HSV can present in one of three different ways: with skin, eye and mouth disease; with a CNS (central nervous system) disease, so encephalitis; or with disseminated disease. And for the first two of these, presentation may be easy to recognise, because they have skin lesions or they may present with fevers and seizures. But it's this last group with disseminated disease that is really, really difficult to recognise, because they present very nonspecific symptoms, of poor feeding, lethargy, they may present with a sepsis picture, but everybody will think they've got bacterial sepsis, and not think about treatable viral sepsis.

Emma: Thanks, Katy. I think the difficulty is that basically babies don't present in many different ways when they either get a fever, or they cry, or parents come in and say they're just not themselves. So, is there any time you shouldn't use acyclovir? Because it seems to me that it will be really hard to unpick beforehand whether this is a HSV infection or not.

Katy: I think that's a very good question Emma, about when you shouldn't use acyclovir. From an infectious disease point of view, we would like to consider HSV and starting acyclovir in pretty much the same way as you do antibiotics, that you start and then you can stop when the cultures are negative antibiotics, or the viral PCR (polymerase chain reaction) tests are negative, but HSV. However, we have to put that into the context of many, many babies presenting to the emergency department and how that would affect 1000s of babies per year.

Emma: I think that brings us back to that reminder, that Hermione talks about, to take a really good history and to talk to the parents. I think the second problem is that we don’t have good point of care tests. So, what we really would love is a point of care tests that will tell us if a child has HSV (herpes simplex virus), when you see them is that slightly sleepy and lethargic, possibly febrile and other moments when to care that don't exist like that. But what tasks can you do, or what tests should you Katy?

Katy: Well, I think the most important thing is to go back one stage, and even before the testing, you have to think of the diagnosis to send off the test. And we've done studies to show that when you ask registrars what diagnoses they consider in an unwell baby presenting in the first week of life, only 3% think of HSV, whereas everybody will think of bacterial sepsis. For instance, everyone thinks of listeria, however, listeria is not nearly as common as HSV in the neonatal population.

Emma: I think that's incredible, because the number of listeria cases in neonatal population is maybe two figures per year, like 10s or 20s.

Katy: Yes, so we know that both junior doctors, and indeed the public, are all very aware of listeria infection, but hardly anybody is aware of herpes simplex infections in neonates and what they can do to reduce their risk of babies getting infected.

Emma: I think that really goes back to that idea that there's such a stigma about herpes simplex virus.

Katy: Yeah, I think there's still a huge stigma around it and it's such a shame because of course, it would turn neonatal herpes into a much more easily treatable disease. Doctors should ask women in pregnancy, and those who are presenting in the emergency department if they have a history of this illness, because we can treat it if we know early enough.

Emma: And it is that horrible combination of being completely stigmatised to talk about genital herpes, and then also disregarding cold sores as anything serious so most people don't bother to treat cold sores, and don’t think that cold sores are in anyway serious.

Katy: Yes, and I think Hermione talked very nicely about what we can do to prevent these infections. And of course, prevention is better than cure, and she talked about the antenatal things we can do. But of course, between 10-25% of these infections are acquired postnatally, and we really need to educate parents and staff in hospitals about the importance of postnatal transmission of herpes from a cold sore lesion or a herpetic whitlow, and providing advice about how not to work with newborns or touch newborns if you have these lesions.

Emma: But what does a herpetic whitlow actually look like?

Katy: Well, it looks almost like blisters, often on the side of your finger, but it can also present like a paronychia, so redness around the nail bed, and it's often confused for a bacterial infection.

Emma: Let’s imagine we live in the world where you could have anything you want. What are the tests that you really dream about if you're concerned about HSV?

Katy: Well, in my dream world, we'd have a point of care test, like we have for COVID these days, to look whether a baby has herpes infection, when they initially present, so we can treat with antivirals at that point.

Emma: But we don’t, so what is our second-best real-world scenario?

Katy: So then we want to think of the diagnosis and take samples from as many sites as possible. Many people think of taking a CSF (cerebrospinal fluid) and sending this for HSV PCR, along with enterovirus and some of the other viral infections. However, we really, really want to catch these babies when they're at the by viraemic stage before the virus is disseminated. And therefore we have to take a blood sample, which is an EDTA (ethylenediaminetetraacetic acid), looking for herpes simplex PCR. So this is not the antibody test, the serum clotted test, which shows your response to herpes, we really want people to send off the viral DNA sample on admission.

Emma: What can you tell me about the kind of swabs we'd like?

Katy: Well, we want the viral swab, which in our hospital is a green swab not a charcoal swab, and it's the same swab of course everybody knows about with COVID these days. And what I would suggest is, any baby with any skin lesions, you may think it's erythema toxicum, you may think it's a staph infection, but please, please send that viral swab as well and you may get a surprise. This means you could start treatment earlier than if you forget that.

Emma: If we were to hit the jackpot and have every investigation that we wished for, that actually exists at the moment, we would like a CFS PCR, we'd like a blood PCR that's in an EDTA tube, and we'd like viral swabs of absolutely everything. So any blisters, any lesions, any redness, and anything that looks like a paronychia, and that swab would be a viral swab, which would be a green swab, not a charcoal bacterial swab.

Christo: Katy, Is there any value in popping blisters to get some of the fluid inside the vesicles?

Katy: Yes, I think we would like to pop the blister and really try and get that green swab into the base of the blister even if it causes a little bit of discomfort for the baby. Your result is only as good as the swab you take.

Well, it's a bugbear of mine that I've been training our juniors about for research studies, on the meningococcal disease, to doing COVID swabs. You don't get your swab to the back of the throat, or in this case to the base of the lesion, a negative result does not necessarily mean anything.

Emma: Katy, going back to our investigations. Remember, this is a baby who doesn't necessarily have a fever, who may look just a bit sleepy. We've talked about what investigations we'd like to try and isolate the virus, but what other tests would you like to do?

Katy: The tests that are very helpful would be the CRP (C-reactive protein) and that's usually low in herpes simplex virus, liver function tests because once your ALTs (alanine aminotransferase) start to rise, your risk of mortality increases significantly, and clotting because again, this can go off in these babies.

Emma: Okay, so we have a list of all the investigations would like. Do we need to talk about treatment?

Katy: I'd love to talk about treatment. I think it's very difficult, and a contentious area at the moment, because infectious disease doctors would like to treat all babies with acyclovir. It's relatively well tolerated; however, it does cause problems with the cannula and the veins, and the cannula tissuing.

Emma: So, although we like vitamin A and acyclovir, we'd like to give it to everybody, it’s a bit like thinking about antimicrobial stewardship, and we need to think who needs to have it. Or we could start it on more children and then stop it if we've done the right investigation. I agree with you, it's always difficult to give, we always struggle with cannulas, and I don't think I have a good answer for that.

Katy: I think any baby in which mum has any history of herpes illness at all we would treat. Any baby who is unwell with nonspecific signs of infection, or sepsis, it would be good to treat. And certainly, any baby who has abnormal liver function tests, or deranged coagulopathy, or who is not getting better after 24 to 48 hours of IV antibiotics.

Emma: And I think you were particularly interested in babies who are under 16 days old, in the first few weeks of life?

Katy: Yes, so we're conducting a national study at the moment and it does seem that the median age presentation with disseminated disease is about six days; with skin, eye and mouth it's eight days; and with encephalitis it’s ten days.

Christo: We worry a lot about antimicrobial resistance, do we need to be concerned about acyclovir resistance in HSV?

Katy: We're lucky at the moment that we don't seem to see acyclovir resistance very often in women who are treated or children who are treated with acyclovir.

Emma: We're still standing! I'm going to give you five minutes to tell us about the BPSU study that you have just recently finished, o that is the British Paediatric Surveillance Unit, which we were just talking about a bit earlier.

Katy: Yes, so this is a study we've been running over the last couple of years, where we look at all anonymous cases of neonatal herpes in the first few months of life in the UK and Ireland. We have interim results to date, the study is not fully concluded yet, but we have found most importantly, that the incidence of neonatal herpes infection has doubled again since the last study that Sarah mentioned that was undertaken about 20 years ago.

Emma: So that means I have to talk to you again, another excuse to come and meet up!

And finally, thank you so much for being with us, Katy, and for the enormous amount of work you've done in this area. And I think it's such an important area because of the lack of recognition and awareness of the horrible disease and the possibility that it could be avoided through a few questions and maternal prophylaxis.

So, do you have three top tips that you'd like to share with our listeners?

Katy: Three top tips are really that antenatal transmission can be reduced, as discussed by Hermione. Postnatal transmission will be reduced by good hygiene and not touching babies if you have a cold sore or a herpetic whitlow. And lastly, we can reduce mortality if a baby does get infected, by treating them early with acyclovir, the key to this is really thinking of HSV as a possible diagnosis.

As you know, Emma I've been badgering you for years to talk about treatable causes viral sepsis, as well as bacterial sepsis. And I think everybody thinks for things like enterovirus, and RSV (respiratory syncytial virus), and viruses that you can't really give specific treatments to, you just have supportive care. But herpes simplex is one of those viruses that you can completely alter the course of the disease if you treat these babies early and mustn’t be forgotten.

Emma: Thank you, Katie. It's the day of the virus, your time has come! I really appreciate it and it's been great fun to talk to you all and we probably should make a date to come and chat again once you've got all the results from the BPSU study.

Katy: Thank you. Thank you very much for having me on your podcast.

Emma: Thank you very much Katie that’s amazing and as always we add all our links on our show notes. For guidelines under management please look for the paediatric and microbial stewardship group. This can be found at: https://uk/pas.co.uk At the time of our recording the guidelines for the treatment of HSV were being updated. The general consensus among the UK paediatric antimicrobial stewardship network is based on Dr Fidler’s current BPSU data. The UK PAS guidelines for neonatal herpes simplex have now been updated. It is recommended for acyclovir to be used in the treatment of neonates with suspected sepsis and any of the following features:

ALT or AST greater than 2 times the upper limit of normal or abnormal liver function tests

Coagulopathy

Vesicles

Seizures

CSF Pleocytosis

Suspected Meningitis of Encephalitis

Recent maternal HSV disease

Post-Natal contact with HSV

The recommendations also strongly recommend considering acyclovir in neonates who present on days 3-14 with one of the following, in the absence of the above risk factors:

No obvious cause

Not improving

Or unexplained maternal, febrile illness peripartum to 14 days postpartum, especially if premature. Thanks you very much I hope you enjoyed the episode

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This podcast is a collaboration between Medisense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

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Emma: The views, thoughts and opinions expressed in this podcast relates only to the speaker and not necessarily to their employer, organisation, the Royal College of Paediatrics and Child Health, or any other group or individual.