HSV1 and Pregnancy/Childbirth + neonatal herpes experience

[Sophaia]

I just wanted to know whether any other mums had passed on HSV1 or even HSV2 to baby during delivery even though they had no symptoms, and also share my experience for mums who may be too afraid to talk about it. I gave birth 4 weeks ago, have had no outbreak for 2 years and baby developed HSV1 and Viral meningitis. I was not on Aciclovir as no risk by doctor (no outbreak in 2 years). During delivery my waters were broken and baby’s head was scratched 4/5 times, I must have been shedding it asymptotically as I had no outbreak, the virus got into babies blood stream via these cuts and gave him viral meningitis as well as the HSV1. We have now been in hospital for 4 weeks and are due to leave on Monday after an aggressive antiviral treatment. I wanted to share my experience to help other mums who may be in the same boat as me and are ashamed to ask or talk about it. Luckily I spotted it 2 days after arriving home and googled it and saw a picture of neonatal herpes and knew that was it. I went to the hospital and they misdiagnosed it as a staph infection ad treated it for that, after lots of pushing they started him on Aciclovir as I was so fearful of my baby dying. Swabs from the lab came back 2 days later and confirmed HSV1. Lucky I spotted it otherwise baby could have seriously deteriorated or died, he has no other symptoms other than lesions on his head (attached below). I’m posting this mostly to raise awareness, push for Aciclovir even if doctor says no risk and also do not let anyone kiss your baby as they may be carriers. Baby now has to go home on Monday but has to take Aciclovir for his first year of life. I wanted to share my experience as many mums may go through this and not see any advice. Herpes is a virus that has a disgusting stigma attached to it, even though most of us carry it. I would also love to hear any other mums experience especially regarding a year on Aciclovir. I have attached pictures of his head lesions bellow for people’s reference because sometimes babies show no symptoms other than lesions meaning doctors will not treat the herpes. The lesions start at red marks, then develop into yellow puss filled blisters and then eventually crust over yellow again. It can be easily mistaken for impetigo.

Some more photos just for people to know what to look out for.

And another.

I'm so sorry for what you want through. I get cold sores - HSV-1 - and this is on my list of things to discuss with my doctor next time I see him as I head towards week 37. Can I ask if you'd ever had HSV-1 manifest as genital herpes or if you'd only ever had it as facial herpes. I know during an outbreak HSV-1 can appear in genital mucous membranes but I hadn't thought of it when not having a facial outbreak. I know HSV-2 is different of course. Happy to pm if you'd rather. I'm sorry and hope your baby makes a full recovery.

I'm normally a bit of a voyeur on here but felt compelled to comment and to thank you for sharing your experience. I have HSV-2 and your post is so, so useful (in showing how important it is to push for Aciclovir in the last few weeks of pregnancy but also what to look for after baby arrives).

Thanks again for sharing what must still be an upsetting and raw experience. Wishing all the best to you and your little boy.

Thanks so so much for your post. I have HSV2 and recently had a baby. Making sure it was effectively managed was a real stress and I wish I was listened to more. I’ll share my experience...

I’ve had genital herpes for about 8 years now. When I’m stressed or drink lots of alcohol I can get several flare ups a month. It’s not pleasant but I’ve learned to live with it. Now and again I’ll take Aciclovir or for months on end to suppress the outbreaks. Weirdly since the birth I’ve had hardly no outbreaks, I think due to lack of periods (breastfeeding) and lack of booze.

I knew I had to mention it to the midwife when I was pregnant because I did my research and knew of the risks. She referred me to a consultant. I went to the consultant appointment and she just said to me that the baby will have immunity passed on from me and that no treatment was necessary. I said no, the RCOG recommends taking Aciclovir from 36 weeks and that’s what I want to do. She said no. She even printed out the RCOG guidance and tried to convince me, so I found the part that recommended Aciclovir and then she said “oh yeah, you’re right” and changed her mind. But before she changed her mind there was too much time spent with me arguing my case to her. In that room I was frustrated, scared and felt like they were making me feel stupid for having this concern. It was awkward to say the least, as I sat there in the consultants room just sobbing uncontrollably while my husband tried to comfort me and the consultant was just saying “I know you’re worried, but you don’t need to be”. Luckily I pushed for the tablets and they agreed reluctantly in the end. In case this happens to anyone else, it may be useful to know you can buy a 3 month course of Aciclovir from Lloyd’s pharmacy online so even if they refuse to give it to you, you can still order it yourself (this is what I threatened to do when she wasn’t going to prescribe me the tablets).

I had actually wanted to discuss the birth and risk of instrumental delivery etc at that appointment but never got the chance because of all the crying. During labour I felt like I was starting to get an outbreak from the stress of the pain and the medical staff examining me etc. I said to the consultant at the time that I felt like I was having an outbreak (could feel the familiar tingle sensation), but he said there were no legions and that the vaginal delivery would go ahead. I was scared I would pass it on to the baby but in the end I had an EMCS due to other complications. I was relieved that the risk of passing it on had been reduced.

My baby had swabs in the hospital and they were negative. All was fine. I still felt let down by my care in this respect and next time I’ll push really hard for an elective CS to save myself the stress of not being listened to.

I’m glad your baby is on the mend and agree that there’s such a stigma attached to this. I didn’t have my mum at the birth because I didn’t want her to her the discussions around my HSV.

Thank you for your kind words. PBobs I had HSV1 on my face. And I think I must have touched my face and forgotten to wash my hands before going to the toilet and spread it. Silly of me.
FeathersMcG no problem, when I found out he had neonatal herpes there was no one who shared their experience, probably due to the unfair stigma attached to herpes, I hope my post helps someone who is too afraid to speak out.
Baby is very strong and I think I passed him antibodies in my Breastmilk and he did not deteriorate. He seems to be making a wonderful recovery, thank you ❤️

Thank you Prettypetal85 for sharing your experience it is so refreshing. I’m sorry you were undermined and made to feel like that at the appointments, mum always knows best and they should have listened and not made you feel that way.
Hopefully both our experiences can help someone out there who is struggling with this.
Yes I nearly didn’t have my mum in the delivery room too but she was luckily very understanding when I explained that it is such a common virus. The stigma is disgusting and hopefully with time and education the stigma will disappear and people will feel more inclined to talk up about it.

This is something that has confused me for a while, I suffer with cold sores on my lips, very rarely in other areas of my face but no where else, somebody told me I can still kiss my baby because they will have the immunity but I still fear kissing my own baby when she arrives, I also don't want anybody else to kiss her 😢 I think people are going to think I'm being really unreasonable and over protective but it's something I feel really strongly about. Also how long does it pose such a risk to babies?

I’ve had hsv1 genitally for about 15 years. Most people have hsv1 on their face rather than down there and although it’s the milder form of hsv for adults it’s more dangerous for babies apparently. So it’s lucky that you realised what it was and caught it early.

I was referred to a consultant with my first pregnancy and he basically said I shouldn’t have even been referred and that there was no risk of passing it to baby because they had immunity from me. I was obviously concerned as info online talks about shedding the virus even when you don’t have an outbreak, avoiding instruments and scalp monitoring and there being a 1% chance that the baby could get it from a vaginal birth. I didn’t feel like they took any of this into account when I was in labour. They used forceps and ventouse and threatened to do the internal monitoring. I was also told not to take aciclovir during the last few weeks. I tried to get it from my gp anyway as I felt an outbreak coming on but couldn’t get appointment so ended up buying it privately online.

Due to all this I was super paranoid about people kissing my baby or that I might accidentally infect them and was closely monitoring her for any marks in the early weeks.

I’m now 36 weeks pregnant so about to stress about this all over again. Your post has reminded me to go to gp to get an aciclovir prescription as an extra precaution (if I can get an appointment before I give birth).

Sophaia thanks very much. I don't have any genital cold sores - I try to be careful but as you found it's not always easy. I'm going to talk to my doctor this week and see what he says. I think I've also got strep B (waiting for test results) so poor little bubs will be running the gauntlet on the way out.

I understand you lelrx, I refuse to even let anyone hold my baby especially now he has a weak immune system. Don’t worry about what anyone thinks, you are mother and you are allowed to be as overprotective as you want. I believe it poses a fatal risk to newborns and babies under 6 months as the have such weak immune systems. They do have a level of immunity as my toddler was kissing newborn whilst he was contagious and she didn’t contract the virus, so I must have passed antibodies to her when she was born. Just be careful if you have a cold sore as you just don’t want to risk it, and defo go with what you think is right and don’t let anyone kiss your baby.

Oh Gosh I do hope your results come back negative PBobs, and good luck with the rest of your pregnancy and labour!

Can I kiss her if I don't have a coldsore? I very rarely get them but worry that even kissing her without I could cause it. Thank you for your response x

Thank you for sharing your experience as well, @Prettypetal85. You mentioned that you had swabs done in hospital. How long did it take for the results to come back? I had one done but have yet to receive results and it’s driving me nuts.

Hi OP,
I have no experience with HSV but my dd did have neonatal meningitis so I can relate to that.
They started her on 3 antibiotics and aciclovir also until the HSV came back negative. She had over 80 IV infusions in the first 2 weeks of life, breaks my heart just thinking about it. There's something horrendous about the word 'meningitis' and I still feel in shock it happened to us.

It was the most horrific 2 weeks of my life and just thinking back to the terror and fear I felt makes me weep now, over 2 years later. But, DD has done well and was discharged after 1 year of paeds follow up.

You are through the worst, keep strong, Wishing you well x

Hi
I found your post on Google images 22 days ago, it's what made me take my 9 day old into hospital and insist it was neonatal herpes I wanted him treated for.
I have herpes and was assured I didn't need any treatment, I was worried 2 days prior to delivery I was having a flare up and was assured by doctors that I couldn't pass it on even if I was active.
I had my waters broke and delivered a very healthy 10.3oz baby boy.
9 days later I noticed 2 small blisters on his head. It was confirmed 3 days later this is what it was he had a 21 day dose of anti virals, but was told he didn't need any oral antivirals for at home which I am now really worried about. He has a sore on his groin which could obviously just be nappy rash but I am worried now about every mark.
Thank you for your post and I hope your little one is all good now x

Thank you for your post. I also have HSV1 and havent had an outbreak since February this year but my midwife told me I will be taking acyclovir during the whole of the 3rd trimester.
My other half gets cold sores where as I get genital herpes. I'm worried about him passing it on even if he doesn't have a cold sore, what are the guidelines on this? As he can't not kiss his son but don't our baby infected.

I gave birth to my little girl 8 days ago, I had a history of GH (not sure which one). I was due to have a planned section but she came a week before and came vaginally, it wasn’t until after she was born that we realised we may have an issue. I was never offered the pre birth acyclovir but GPs or midwives despite me being very open about it to them and it being in my notes.
We spent the night on the ward before she was taken to SCBU where they’ve had her for a whole week now on acyclovir, first via cannula and now a long line via her foot. They tried for two days to do lumbar punctures but they weren’t successful but 5 days ago they managed to collect fluid and sent it to London for testing. It’s been a very hard and long week for us and we still haven’t heard any results, I know the cultures take 48-72 hours to grow but surely 5 days is enough to get some kind of result. We’re patiently waiting and praying we get good news as her bloods and preliminary tests came back negative.

How long on average has everyone had to wait for LP results?