Counterintuition – why neonatal herpes turns logic on its head

“No maternal history of herpes”

When dealing with a newborn baby with a fever, those are words that strike fear into my heart.

Wait, what? You said no maternal history? Yep, that’s right.

Neonatal herpes simplex virus (HSV) is a topic that is full of counterintuitive statements, and far too much confusion. The wrong people get tested, the wrong people get treated, the wrong babies get worked up aggressively. When other docs diligently rattle off the “pertinent” aspects of the maternal history and clinical examination of the baby, in my mind I’m mostly saying “Don’t care, don’t care, don’t care….” before I interject and ask about test results that often haven’t been ordered.

Based purely on a numbers game, thanks to things like vaccination and Group B Strep prophylaxis, many early onset infections in newborns have been reduced. There is simply less infectious disease hanging around. But as a result, viral infections like neonatal herpes are proportionately becoming larger players – in some hospitals it is as common as bacterial meningitis. And neonatal HSV is a killer.

HSV comes in three distinct flavors – the least lethal is skin-eye-mucus membrane (SEM) disease. This is how many people expect to see herpes – a rash, typically vesicular (clear fluid-filled little blebs) and maybe some eye discharge or mouth sores. Most pediatricians, if they see something like this, appropriately freak out a little bit. SEM disease by itself isn’t too dangerous, and if treated properly is almost never fatal. Herpes is tricky though – in babies it can mimic other rashes, so you really do need a low threshold to consider it. ANY neonatal rash that doesn’t fit a normal neonatal rash (so know your neonatal rashes!) deserves a workup. There is nothing more sobering than to run a case of a neonatal rash by an ID doc and to have them tell you with complete sincerity that “You can save this baby’s life. Get them to an ER. Now.” Untreated SEM disease can progress to infection of the brain.

The most obvious presentation is disseminated disease – which weirdly enough can occur before SEM disease…first week of life or so. The kids are sick – really sick. They can be in shock, bleeding, in liver failure and struggling to breath as the virus overwhelms pretty much every organ system. The problem here is that even faced with this situation bacterial infection is considered immediately, and herpes can still be overlooked or thrown into the mix as an afterthought. Again, good neonatologists and pediatricians will be all over this from the start, having experienced their share of disasters in the past. Disseminated herpes is mostly fatal without treatment – and even with therapy about a third will still die, many of the survivors left with significant disabilities.

The last type of herpes infection is of the brain. Typically presenting later in the neonatal period (3-4 weeks of age, rarely later) herpes encephalitis of the newborn is devastating. Herpes causes a hemorrhagic encephalitis, meaning that it chews your neurons up into a bloody pulp. To a brain that has barely begun its developmental process, this is a disaster. Even if the baby survives they may be blind, deaf, paralyzed or have significant developmental delays.

From how I describe it above you might assume it would be easy to spot these kids. Well, it is – once it’s too late. The success of treating HSV depends to a large extent on how quickly you can start acyclovir – one of the few medicines we have that can treat viral infections (it’s pretty much only used for HSV). Acyclovir can shut down virus replication, but does nothing for those cells already infected. The difficulty with HSV lies in the nuances of the medical history.

Let’s try some armchair science for a bit. Would you, as a baby, rather get HSV from a mother who is having a recurrent outbreak of HSV, with low-levels of virus, and have her give you antibody protection through the placenta…or would you prefer to catch HSV from a mother who is having her FIRST outbreak (which may be without symptoms) with high-levels of virus and no antibody protection? Well, you may ask, how likely is that? The answer is Very. About 90% of all neonatal HSV cases come from mothers with no history of HSV. If your mom DOES have HSV and has a recurrent outbreak, the risk of transmission is about 5%. For a new case – its closer to 50%. Maternal history of HSV is relatively PROTECTIVE for the baby.

But the focus is on the mothers who test positive for HSV during pregnancy. They get put on valtrex (an oral version of acyclovir which is well absorbed), when it has not been shown to sufficiently reduce transmission. They may get a C-section, when that hasn’t been shown to help either (except maybe in the case of active lesions at the time of delivery…and even then it’s unreliable). The mothers who are HSV-negative are ignored, when they are those at highest risk of passing HSV to their babies. In an ideal world, their sexual partners should be tested and if THEY are positive THEY should be put on valtrex to reduce outbreaks and educated about the risks. But the fathers aren’t the patient….so nobody does that.

A big myth about HSV is that all babies with it look sick. Well, they do eventually – but to start with they look pretty normal. I have heard docs say that a baby looked “too good to tap” – meaning they didn’t perform a spinal tap to check for meningitis or HSV encephalitis. Or they don’t test sufficiently for HSV, or don’t start treatment with acyclovir while test results come back (these same babies are almost universally started on antibiotics for presumed bacterial infection). Published case series of proven HSV cases shown over and over again that babies with HSV present with relatively innocuous symptoms. “poor feeding” “fever” “sleepiness” before the more obvious symptoms of “shock” “seizure” or “respiratory distress”. Remember, by the time the baby is sick from HSV the damage has already been done, and you can only try to stop it from getting worse and hope the kid recovers. With bacterial infections we can kill them directly with antibiotics and the damage is usually secondary to the infection, and not because the bacteria are literally eating up your cells and blowing them apart as HSV does. Even with successful treatment, symptomatic HSV in babies has a slow recovery.

So how do you deal with this uncertainty? You can’t trust the mothers history, you can’t trust the baby’s physical examination or symptoms…what do you do?

My approach is to have a low threshold for suspecting HSV in neonates. ANY baby getting worked up for a possible bacterial infection needs to have a workup and empiric treatment for HSV as well. Babies with weird symptoms (especially rashes or neurologic symptoms) need to have HSV considered FIRST, before bacterial causes. HSV is not only potentially devastating – its treatable, and therefore the bad outcomes are preventable.

Fortunately the Committee of Infectious Diseases of the American Academy of Pediatrics has published recommendations – albeit in a rather inaccessible set of paragraphs. I can summarize them here though:

Spinal tap for HSV PCR of spinal fluid.
Liver enzyme testing for disseminated disease – chest x ray if respiratory symptoms.
Surface cultures from eye, mouth, rectum and any skin lesions.

Start acyclovir – do not stop until all tests are negative.

Do ALL of this this for EVERY BABY with suspected HSV.

Repeat spinal tap on kids with positive CSF to ensure clearance after 21 days – continue therapy if still positive.

A big mistake I see people making is in testing the spinal fluid to “rule out HSV” but do not doing the rest of the workup. Spinal fluid testing for HSV no more rules out SEM or disseminated disease than a urine culture can diagnose meningitis. I have seen cases missed (or nearly missed) because someone didn’t do the whole thing. You NEED the liver enzyme testing to rule out disseminated disease, and it matters. Treatment for simple SEM is 14 days – treatment for disseminated or CSF disease is 21 days. I have seen a handful of kids with positive CSF tests but with totally normal looking spinal fluid (eg no white cells, normal protein levels etc).

The trouble is HSV, as bad as it is, isn’t all that common among the hundreds of kids you will see with suspected neonatal infection. And many of THEM will be obviously HSV. So many kids get a semi-workup and we get away with it because “whoops, the CSF is positive!” and you treat for 21 days even though you didn’t check the liver enzymes.

But I’ve also seen the opposite – kids who were partially worked up and the diagnosis was missed, or delayed, or the severity was under-appreciated. All too often the “standard of care” let’s these kids slip through the cracks – which is inexcusable in my mind when there are experts who put it down in writing exactly how to work up these cases.

So let’s raise the standard.

Totally useless history:

Mom has no history of HSV
Mom got Valtrex
Mom got a C-section
Baby looks well

REAL risk factors for neonatal HSV:

Prolonged rupture of membranes
Active lesions at time of delivery
NO maternal history of HSV
Prematurity
Age less than 21 days
Unusual rash
Seizures or lethargy
“Sepsis” not responding to antibiotics (oops! too late! – better call your lawyer…)

Testing

CSF PCR
PCR/Culture of skin lesions, eyes, mouth, rectum
Liver enzyme testing
Chest X ray (if symptomatic)

Treatment

Acyclovir 20mg/kg/dose IV every 8 hours
Until all tests are negative (typically 2-3 days empirically)
14 days for proven SEM disease
21 days for disseminated or CNS disease

And if you’re not sure…get a consult

20120811-115407.jpg

  1. #1 by Beth on August 10, 2012 - 12:19

    Nick, this is fantastic. Says so well what we should have been doing all along. It’s funny how as residents we didn’t pay much mind to HSV outside of ordering the PCR once you get the CSF. Now (I hope) it’s become standard of practice here to go the Full Monty – swabs, enzymes, PCRs, and acyclovir. We’ve seen at least 2 cases of this recently (within a couple of months) and I remember one I saw as a second year resident that was initially billed as omphalitis. Too important a diagnosis to miss. I’m spreading this far and wide – thank you!

    • #2 by Nick Bennett on August 10, 2012 - 16:17

      Hi Beth – thanks for sharing 😀

      I know for a fact that at Upstate now they have a VERY aggressive policy, as part of the antimicrobial stewardship system. IV Acyclovir is in short supply, so it is restricted use and requires ID approval. Although ID would NEVER restrict acyclovir to a neonate, the Powers That Be saw fit to keep neonates on the approval pathway because they wanted to hear about every neonate being admitted…just in case. Nowadays pharmacy will not release the acyclovir unless the residents have ordered the PCR, surface cultures and LFTs…they don’t rely on us telling the residents to do it. They want to see it done. It’s a great example of how proper antimicrobial stewardship relies on an interplay of ID, pharmacy and micro.

  2. #3 by Matthew Mittiga on August 10, 2012 - 15:46

    Phenomenal article, simply outstanding!

    I can’t remember ever doing a septic workup on a neonate that did not include PCR for HSV and usually Enterovirus. I think we did a pretty good job of that. Often, there simply were no vesicles or lesions to culture, but as part of the workup, a CMP was usually done.

    One thing I was never really sure about was when to stop empirically giving Acyclovir in a rule-out sepsis case. Some attendings wouldn’t do it after 8 days of age, some longer, some included it up to a month of age. So is 21 days that standard of care to include acyclovir in all sepsis workups?

    • #4 by Nick Bennett on August 10, 2012 - 16:01

      Hi Matt,

      Thanks for the kind words 🙂

      Sarah Long (one of the experts on HSV I link to) found that almost all cases occurred before 21 days, and that this was when you could reasonably expect to see HSV. My personal cutoff is 28 days because CNS disease can occur out that far and is really freaking nasty. Dr D would say out to 6 weeks is possible since he has seen it, and I would agree especially if the kid is a premie (never trust a premie 😉

      I will argue that any kid under 4 weeks should get covered unless the admission really is weak (in which case, why are you admitted the kid…?) and if you wanted to cover out longer, even as far as 8 weeks I’ve seen it used, I wouldn’t argue much against it. Acyclovir is a pretty safe medication, you’re only going to be using it for a couple of days until testing is back, and you could literally save a life.

  3. #5 by Nicholas Fogelson on August 10, 2012 - 18:56

    This is an outstanding article. Thank you.

    I am in complete agreement with your thoughts on maternal HSV as a risk factor. I have often questioned our policy of cesarean delivery for active lesions given that maternal IgG should be protective for the infant. Its clearly the standard of care, but I’m not sure that it works, or that it is even necessary. Its clear that women shed HSV intermittently even when there are no lesions, so the “active lesion” idea has some issues. I once looked for data to support the practice of cesarean for active lesions and couldn’t really find it, but I’m not sure I was looking in the right place. It is clearly a standard right now, though.

    Your idea of testing partners is an interesting one, though at a population level would be problematic. I’m not sure how it would really work: You test mom, she tests negative, now you test her sex partner, if they’re positive put them on valtrex. Seems cumbersome, and expensive for the number of cases of neonatal HSV that you would catch.

    I’d love to link this up on my blog!

    • #6 by Nick Bennett on August 11, 2012 - 10:02

      Hi Nick (feels weird to type that…;-).

      Thanks for the track back. I too didn’t find much to either support or refute the C-section approach for active lesions. In my mind active lesions = obvious risk. The difficulty lies in the fact that not seeing lesions not not = low risk.

      Putting the partner on valtrex would be more problematic logistically, but I wonder if you’d end up putting fewer people on it overall than you would by putting all the HSV positive moms (rolls eyes) on it.

      The point was mainly that the logical approach is entirely opposite t what is currently being done 😉

  4. #7 by Chris Nitkin on August 10, 2012 - 19:05

    Cheers Bennett!

    For a rule-out sepsis <28 days it makes sense to me that you would cover for maternally-acquired HSV, but at what point would you start thinking about it again? Or would you test and empirically treat any patient after that age that you think has meningitis/encephalitis (eg, a 4 or 6mo who presents with fever and lethargy)?

    I haven't run the numbers on monetary costs, but personally, I would rather over-treat than fail to treat a true case of HSV because (a) it's a devastating disease, and (b) we actually have an effective anti-viral in our arsenal.

    • #8 by Nick Bennett on August 10, 2012 - 19:09

      After 28 days I think about it for any kid with encephalitis, but not necessarily sepsis or meningitis. You can keep testing for it in meningitis, but weirdly enough you don’t have to treat it – it just gives you an answer.

      HSV is weird – meningitis, no issue. Encephalitis – lethal. When it comes to a positive CSF PCR for HSV “clinical correlation recommended”.

  5. #9 by Matt on August 10, 2012 - 23:33

    Well said, Nick. Now that I am ensconced in NICU life, we are doing rule-outs on a ton of babies and using blood cultures and CBCs in order to stop Amp and Gent. Should we be checking HSV too?

    • #10 by Nick Bennett on August 10, 2012 - 23:52

      Most babies in the NICU are “rule out sepsis” by sheer virtue of being born premie. Most just get amp/gent for a couple of days then are all set. Unless they’re acting truly septic (or have a weird rash) it’s reasonable to hold fire on the HSV treatment and workup. Herpes that early is rare, and usually due to intrauterine infection, which has red flags (maternal fever, PROM, lesions) and the baby arrives trying to die, often with a rash.

      I have seen a few cases of true intrauterine HSV, usually not subtle. One was spotted due to a rash on day one of life, looked awesome, but ended up with a positive CSF PCR despite zero WBC there. The maternal history was negative but there was a few days of PROM as I recall.

      Weird factoid from the NICU – apparently orange tracheal secretions suggest HSV in the lungs. Totally not evidence based, just something the nurses would swear by – and they were usually right.

  6. #11 by nmatloub@gmail.com on August 12, 2012 - 00:44

    thanks for this great informations i

  7. #12 by Jennifer Gunter (@DrJenGunter) on August 12, 2012 - 11:55

    Great post!!

  8. #13 by joycnm on August 16, 2012 - 13:48

    Here in Amish country in Central NY, we had a case of an 18-month-old toddler with herpes encephalitis…diagnosed only because the parents insisted and insisted on further testing. Both parents had h/o oral herpes. Only 6 months prior, a family had a newborn in their home with 2 young children with oral herpes and the father of the baby as well. I instructed them on risk factors/dangers and told them to call their family doc, who told them their risks were “very low” and “not to worry.”

  9. #14 by Koncsag Sz. Előd on August 19, 2012 - 16:30

    Reblogged this on Lapocska.

  10. #15 by Paula on August 25, 2012 - 12:57

    I appreciate this great article. I have been trying to find information on postneonatal herpes. My son is 10 weeks old, and was exposed to a single, undetected lesion during a vaginal birth. We were sent home from the hospital, as normal just making sure to watch him for the first 4 weeks for any unusual behavior, which we have not seen. I have a long standing infection of 12 years and was wondering what the likelihood is that symptoms could still present? In your experience do antibodies protect a child or just prolong the incubation period? Is there anything that could be done now to detect HSV?

    • #16 by Nick Bennett on August 25, 2012 - 21:56

      I can’t speak for your case specifically, but IN GENERAL antibodies are protective, and don’t delay symptoms of neonatal HSV. I wouldn’t both chasing it at this point as the risks of serious disease drop off dramatically beyond 4-6 weeks of age.

      That’s not to say that HSV still can’t cause serious disease – it can in healthy adults after all – but I wouldn’t stress over it such that it ruins the enjoyment of your baby 🙂

      • #17 by Paula on August 26, 2012 - 12:34

        Nick, thank you so much for your response. I wish I could enjoy my child. The guilt and fear have crippled my life.I wish there was a test to conclusively determine that there was no infection. Until then, I will be forever fearful.
        I do want to say that i greatly appreciate your feedback. Of the countless other people I have looked to for help, they have not given me answers, just said, “at his age he is fine.” I have read online that asymptomatic neonates do not exist, however I have also read online about children presenting with symptoms after the neonatal period as well, which is what scares me.
        Do you know how the virus could lay dormant in an infant without showing any symptoms first?
        Again, thank you for your response, and hopefully one day I will be able to find peace.

      • #18 by Nick Bennett on August 26, 2012 - 13:00

        HSV is extremely common – neonates are the most vulnerable to it because their immune system is pretty poor, but as half of all adults are infected with HSV in one form or another, you can see that clearly most people get infected with no real issues.

        In general terms, if kids present months after birth with HSV, it’s got nothing to do with a birth exposure. I’ve even seen neonatal HSV from an HSV-free mother, but with an affectionate grandmother with a cold sore on her lip. We can be exposed to it at any time, since people can shed without symptoms.

        Here’s the thing though – if there was test that showed an older baby was infected, but they had no symptoms, as a doctor I wouldn’t care. If the test showed the baby was not infected, they could still pick it up aged 1,2,3 or 13 years and get sick so a negative test wouldn’t mean anything either.

        HSV can lay dormant and reactivate, but that would be incredibly rare in a neonate (they’d basically all get sick…no way to lay dormant without someone noticing it first), and reactivations are generally mild disease – nothing like neonatal HSV. You have to remember that anything you read online, ESPECIALLY patient/parent stories, is prone to misunderstandings of what is really going on.

        The entire anti vaccine movement for example is built on such misunderstanding…you can see how far that has spread!

  11. #19 by paula on August 27, 2012 - 10:42

    I do keep reminding myself, when reading parents accounts that I don’t know all of the facts, however it stays in my mind as something very scary.
    As far as him contracting the virus in his toddler years, or into adulthood, I can come to terms with that, as I understand most of the population has some form of it, however it is now that I am worried about. Although it is terribly unpleasant I could deal with him getting a cold sore, but the fear of him still presenting with disseminated disease or encephalitis from birth is what worries me.
    Again, thank you. I greatly appreciate your expertise.

  12. #20 by Madeline Q on October 16, 2012 - 16:59

    Thank you for such an informative article!
    I’ve been reading about the many risks involving vaginal birth when the mother has herpes – even if lesions do not appear to be present at the time of birth, virus could still be shedding. My question is what is the best road to take for an expectant mother who’s had recurring vaginal herpes infection?

    Could taking antiviral drugs a few weeks before birth be a way to make sure vaginal birth is less risky? Should we ask for a cesarean even though no other risk factors are present and no lesions are visible? Should the parents put pressure on the hospital to check and double check everything they can to make sure the baby is not infected, or to find out about the infection early enough?
    Your opinion on this would be greatly appreciated!

    • #21 by Nick Bennett on October 17, 2012 - 20:10

      In general both the use of antivirals and C section have NOT been shown to reduce the risk of transmission. Some people advocate a wait-and-see approach, others will swab babies after 24-48 hours (not before) and test for HSV if the mother is having an outbreak.

      The trick is that mothers with a history of herpes are actually at a lower risk of transmitting HSV than those without a history. Weird but true.

      • #22 by Madeline Q on October 18, 2012 - 05:40

        Thank you for your answer, Nick!

  13. #23 by Ceridwen on November 4, 2012 - 00:43

    My husband gets cold sores and I do not. I’ve been tested twice for HSV 1&2 exposure and come up negative both times, most recently a month before becoming pregnant. I’m now 14 weeks pregnant and curious about what precautions we should take to avoid the risk of neonatal HSV. Typically we avoid contact when my husband has or thinks he may be getting a cold sore and he immediately starts a round of Valtrex. This has clearly been sufficient until now, but with the baby on the way the stakes are a bit higher than normal if I were to contract it from him. Does it make sense to avoid receiving oral sex during the last trimester and ask to have my husband put on Valtrex (which he normally takes only when he has an outbreak)? Also, is there a risk of him transmitting it to the baby after birth?

    Obviously these are questions we plan to bring up with our OB during our prenatal visits, but I found this article really interesting and would like to hear your thoughts on the situation.

    • #24 by Nick Bennett on November 4, 2012 - 07:15

      Hi there,

      I can’t provide any specific medical advice, but in my mind prevention is better than cure! I would definitely recommend talking it over with your OB.

      Bennett

  14. #25 by MumofHSV1 on November 14, 2012 - 16:41

    Thank you, thank you. Our son had fully disseminated HSV1 leading to a month in ICU. A great GP believed me when I reported a low grade fever (no other symptoms on him – no infection on me). The hospital kept him in routinely for a week after spinal tapping etc but all came back clear and they just treated with antibiotics. Just one day before he went unclottable did the liver enzyme flag up a problem and they were ready with acyclovir. He went into multiorgan failure a day later. 6 months later we have been lucky and he has emerged with a damaged liver but is doing well and is off the liver transplant list and no other problems known yet. He has been on the superurgent transplant list (removed when HSV diagnosed the following day) and recovered enough to be on the normal transplant list, but is currently back to near normal liver function and off the list completely but the chances are he will need one in the future.

  15. #26 by K H on December 27, 2012 - 13:16

    Thank you for this article. I got a cold sore 6 days postpartum and wore a mask to avoid transmitting it to my newborn. It is difficult to find info regarding postnatal exposure to HSV-1 and my pediatrician isn’t well versed in it. In a previous comment you mention risk decreases dramatically around 4-6 weeks. Does that mean after 4-6 weeks regardless of how/when a baby is exposed their risk for serious disease is lower? Basically I’m wondering at what point being exposed to the HSV virus isn’t statistically as dangerous. I know there’s still a risk for anyone , but generally most people exposed are fine. The stress of not wanting to have my baby develop neonatal HSV isn’t doing any favors to my trying to avoid another outbreak.

    • #27 by Nick Bennett on December 27, 2012 - 13:24

      All I can say is that when I see a child who acquires HSV *horizontally* (ie from someone else in the environment) compared to *vertically* (from mother at time of birth) my level of concern for invasive disease is less, but the timing matters a lot. After a month or so the immune system seems better so the kids may get skin disease but it doesn’t seem to as readily turn nasty.

      As always, every kid is unique. Some newborns do fine and some later horizontal transmission can be serious. It would be very prudent to cover any cold sores during the first month or so. Any further, specific, advice should be sought from your own doc and pediatrician.

  16. #28 by Michelle on January 15, 2013 - 23:26

    I found out I had HSV during my pregnancy after I delivered. Long story but because of billing problems I was looking over medical records and saw a HSV test done during my first trimester was positive with a 2.39 value. My OB never mentioned this or was there any precautions taked. I have never had a breakout. Not mentioned in any of the Drs chart notations. However 8 months prior HSV was negative. My doctor will not return my calls. My daughter is almost 6 months old and has had no major problems. She did have periodic blue legs during the first month and flat red splotches (not blisters or a rash) on her legs and back of the neck. She did grunt early on while breast feeding and her back felt rattlely sometimes as she breathed. My husband says that when he gives her a bottle now she occasionally gulp and breaths hard, seems like she is under distress. Pediatrican not concerned but she is not aware of my untreated HSV during delivery yet. My daughter seems on target physcially and mentally. She did have a red dot in the white of her eye and the dr said to watch it. It has broken up and looks like it is going away. I wonder if these are things that could be HSV related. I’m wondering if she should have a complete work up. She has an appointment next week. Needless to say I am very upset with my OB and also the hospital. The Dr. notes for admission stated HSV pos. Maybe it was printed automatically from the office because there is no other mention of it. ??? The hospital must have seen it also. It seems like we just fell through the cracks……

    • #29 by Nick Bennett on January 16, 2013 - 22:13

      Unfortunately I can’t provide any specific advice online like this, but these are all great questions to raise with your pediatrician. Ultimately the most important thing is that you and your daughter remain healthy, and I’m sure if there were signs of serious illness they’d jump on them. Babies can have funny rashes and make odd noises (especially when feeding) and it’s all normal. I find that photos and videos shown to the doc are often very helpful when trying to describe something that’s concerning to a parent or patient.

  17. #30 by Michelle on January 16, 2013 - 22:53

    This is a great article! I commend you for writing it. Awareness of how to spot this silent killer disease has to be spread in the medical community as well as to unsuspecting parents.
    My daughter was born with disseminated neonatal herpes. Unknowingly, I contracted the virus one day prior to delivery, by her father. The delivery went well and when I brought her home, she seemed perfect. However, during the first week she seemed sluggish and sleepy which was odd to me, but I wasn’t alarmed until I checked her temperature and noticed she had a fever. I rushed to the emergency room. Doctors performed a spinal, tested her liver enzymes and hospitalized her. Even prior to the actual diagnosis, she was on acyclovir. These doctors saved my daughter’s life. And I will forever be grateful!!!
    She responded well with treatment, survived and so far at the age of 13 months, her development is typical. However, she still suffers from monthly recurrences of the skin lesions.
    She could have easily been one of the many newborns who were misdiagnosed or treated too late. We are truly blessed that she was this fortunate.

  18. #31 by Sheila on April 5, 2013 - 23:27

    Hi,

    I am 21 weeks pregnant, and just found out that my partner has herpes. I tested negative for herpes at 18 weeks, but I’m now terrified that I could have caught his virus. I haven’t had any outbreaks to date. As you said, mother’s who contract the virus during pregnancy are much more at risk of passing it on. I plan on getting tested repeatedly throughout the rest of my pregnancy, but what else am I able to do in the way of prevention? What is the likelihood, in the case that I acquired the virus during my first or second trimester, that I will pass it on during birth? I’m terrified, and based on what I’ve read so far about mother’s who got exposed DURING pregnancy, I am considering abortion, but am saddened by the thought of having to do so. PLEASE HELP. Thank you.

    • #32 by Nick Bennett on April 6, 2013 - 12:42

      I feel for your situation but can’t provide any personal help online unfortunately. In general, the simplest thing for anyone in your situation is just to minimize the risks of sexual transmission during pregnancy from your partner. That might involve anything from preventing outbreaks in him, abstinence or using condoms. The risk is really AT the time of delivery since infection in the womb is so rare. For babies born to mother who are known to be having an outbreak or infection at the time of delivery, watching the baby like a hawk for the first few weeks for signs of infection or fever is probably all that’s needed to be done.

      Your better off talking to a pediatrician or Peds ID doc locally for specific advice to your situation. Many docs will see the parents of a future patient for counseling, and in fact it’s always a good idea to vet your future pediatrician beforehand!

      Cheers

      Bennett

      • #33 by sheila on April 11, 2013 - 18:25

        Alright. Thank you so much for your reply.

      • #34 by Trish on April 20, 2013 - 19:28

        I’m 36 weeks pregnant. My doctor tested me for herpes simplex 1 and two. My blood test came back positive for herpes simplex 1 but negative for herpes simplex 2. I’ve never had a cold sore outbreak in my life, nor have I had a genital herpes outbreak. My husband has had a cold sore and so has my mom. My OB wants me to take Valtrex daily for 30 days. She feels that this will prevent baby some catching herpes when I deliver. None of this makes sense since I’m herpes simplex 2 negative. Can herpes simplex 1 turn into herpes simplex 2? Would it be best to take Valtrex

      • #35 by Nick Bennett on April 20, 2013 - 20:35

        The decision as to whether or not to use valtrex is up to you and your doctor, but these days the distinction between HSV1 and HSV2 is genetic only, and it doesn’t matter what body area is affected. Both types of virus can cause cold sores, both can cause genital sores, and I’ve definitely seen both cause disease in babies.

        From the literature that I’ve read there doesn’t seem to be much benefit from using the valtrex. There is a link in the blog post above. The risk of passing on HSV to a baby from a mother who is already infected is about 5%. It’s the mothers who don’t have a history that worry me more, as if they get infected close to delivery the risk is closer to 50%.

        As always, this advice is worth exactly what you paid for it, so talk it over with your own doctor 🙂

      • #36 by Trish on April 21, 2013 - 00:52

        So am I considered infected if I’ve never had an outbreak but my blood tests positive?

      • #37 by Nick Bennett on April 21, 2013 - 00:55

        That’s how I would interpret positive blood tests. About half the population is positive for HSV in this way. Obviously half the population don’t suffer from recurrent HSV outbreaks – which just goes to show how common infections without symptoms are.

  19. #38 by Trish on April 22, 2013 - 22:24

    Do you work at Upstate University Hospital Syracuse?

    • #39 by Nick Bennett on April 22, 2013 - 22:37

      I trained at Upstate but I’m currently at CT Children’s Medical Center in Hartford.

  20. #40 by Lindsay Curtain on April 23, 2013 - 23:28

    Thank you for this article I am the mother of an amazing little survivor of hsv encephalitis type 1 after contracting from a cold sore his father had shortly after his birth, at three weeks of age my beautiful newborn baby started having seizures rushing him to the hospital I had no idea what could be wrong with him he was started on antibiotics and given every test you could imagine since it was a Friday he did not have a lumbar puncture don’t until the following Monday which was unsuccessful and repeated days later where they found no hsv. He was then taken off antibiotics and acyclovir which I think was given for a few days they went over everything from genetics epilepsy rare conditions such as hand foot and mouth to the possibility myself and my partner were related. Which we are in no way related anyways as a concerned educated parent I started researching on my own and recalled that dad had recently had a cold sore and told the doctors could this be encephalitis it was at this point although still unsure it was hsv encephalitis that they decided to put him on acyclovir for 30 days if it weren’t for this I don’t think he would have survived. I have thought back on all of this as well as researched and just wish that something could have been done sooner to stop the spread of the virus which wiped out almost all of the right hemisphere as well as some of the left, he is three and a half years old with speech delay speaks only about twenty basic single words otherwise his development is quite good. I hope that one day there is not any confusion to what could be causing hsv encephalitis with things that you mentioned such as a full work up of tests and putting them on acyclovir immediately as my son was taken off acyclovir and put back on a week later after I said that is what I think it was not all of the other ideas suggested. I am thankful he survived just hope another parent doesn’t loose a child or have to go through this again. lindsaycurtain@hotmail.com my son also gets recurrent outbreaks of herpetic whitlow which was tested and confirmed it was hsv 1 although after many attempts to diagnose his finger lesions I was told it was a burn or a blister from sucking on his finger a dermatologist finally confirmed it was herpetic whitlow.

  21. #41 by mom2many on June 29, 2013 - 02:45

    Hello,
    Thank you for your article. It’s the best one I’ve read so far – and I’ve been reading everything on the internet about neonatal hsv!
    I’ve had hsv2 for 22 years. And I’ve given birth to 9 babies, all healthy and full term and delivered vaginally.
    With my last baby, I had an active lesion at the time of delivery. This was the first time that I’ve had an active lesion on or near my delivery date(that I am aware of) My labor was extremely quick with this baby – just 1 hour 20 minutes from first contraction to delivery. The baby was born in a birthing pool, and my bag of waters did not break until his head popped out. His body followed within one minute. The lesion was up high and I held a washcloth over it while the baby was crowning and being born. I know for a fact that the baby had no contact with that lesion…BUT I could have been shedding in the birth canal or perhaps there was an unseen lesion on my cervix or elsewhere. So there is really no way to be sure the baby didn’t have contact with the virus during birth. But the fact that my labor was so short, and the baby wasn’t in the birthing canal all that long…AND my water bag didn’t break until his head came out…I think to myself that the risks are still low for infection during the birthing process. All that, plus he has my hsv antibodies.
    But I’m still a nervous wreck. He is 26 days old now, and on day 21 he began getting pimples on his scalp and face. Baby acne, so it seems. His skin is red in spots, and there are bumps. But they don’t have pus in them, they look just like pimples. It really does look like baby acne, but none of my babies have had it on the scalp before so I don’t know if that’s something to worry about. He’s eating like normal, he’s the typical 3-week old – fussy at times, content at times. He sleeps well, he’s alert. No fever. I see no other symptoms. Only the pimply rash worries me.
    So I’m wondering…he will be 4 weeks old in just 2 more days. WHEN can I stop worrying? Is it true that babies of mothers with a history of hsv can present symptoms LATER than the typical 4-21 day incubation period…and that it’s almost always hsv encephalitis when they do finally show symptom? I can’t remember where I read that, but I DID read that. THIS, of course, terrifies me.
    Anyway, I was just wondering what your thoughts are in my situation.

    • #42 by Nick Bennett on June 30, 2013 - 07:24

      I can’t give pt-specific advice over the web, I can just say what I’d tell anyone with a newborn – watch for fever, signs of poor feeding, extreme tiredness, or more serious things like seizure. At this point there’s nothing I’d do differently. If anything worries you have a pediatrician evaluate him. They’re good at spotting newborn rashes!

  22. #43 by mom2many on July 1, 2013 - 03:51

    Thanks for you reply. He’s 28 days old now and still seems perfectly fine. He still has the pimples but it really looks like the typical baby acne. I’m just wondering when I can stop worrying? Is there a certain age when he’s “in the clear” of having contracted neonatal herpes from the birth? I guess I worry that the antibodies he’s gotten from me might be suppressing the virus (instead of having had prevented him from contracting it) and that any day now (or sometime in the near future) it will no longer be suppressed and he will get sick from it. Has that ever happened, to your knowledge?

  23. #44 by Jill Rogers on January 21, 2014 - 16:34

    Thanks for the great article!

    I have suffered from HSV-1 since I was a child – only manifesting in the form of fever blisters/cold sores. As I have gotten older (now 38), the outbreaks have consistently decreased, but of course reoccur during times of stress, tiredness, or physical irriation of the area around my mouth.

    I had my first baby in December, and I believe that on day 20 of life, he was exposed to a herpetic lesion on my nipple, via breastfeeding. At the time, I didn’t even know that one could get herpes on the nipple, but when I started reading about ways to heal blisters of the nipples, I soon learned that one could, and also about the dangers of neonatal herpes.

    Long story short, my husband and I took our baby to the ER at Arkansas Children’s Hospital 2 days after exposure. He had no fever and was eating well, but was a little irritable, and also had a couple of bumps just under his lower lip (which cleared during our hospital stay, and apparently were just regular baby irritation/acne). He was admitted and IV acyclovir was administered (every 8 hours, 20 mg/kg) as a precaution while we waited for the results of the multi-site swab cultures to come back (which took about 56 hours from time of the first dosage of acyclovir). Swabs were done of his nose, mouth, and rectum (for whatever reason, a swab was not done of his eyes in the ER – the ID dr was a bit dismayed when he found out, but then said he was comfortable with just the nose swab since the eyes drain into the nose). The related cultures were ultimately negative (no HSV isolated), as was the spinal fluid bacterial culture and the blood culture which were also performed.

    He has remained asymtomatic since we returned home, and he will be 6 weeks old tomorrow. He was born at 40+2 (induction, failure to progress, then c-section) according to the official medical record/estimate, although based on true conception date, I believe his gestation at birth was 39+2.

    All that said, I was told that I could/should continue to breastfeed on the unaffected breast, and pump and discard the milk from the affected breast until the lesion fully crusted over. I am struggling mightily because while I want to give my son my milk, I am terrified of him contracting the disease from me (and SEM potentially leading to more serious/invasive illness), and so I am paranoid about every little irritation/break in skin on my nipples/etc.

    Long story short, we have been giving my son only formula for a week now…I have been pumping to maintain supply but have wound up throwing out tons of breast milk because I am scared to give it to him. The lesion on the affected breast is now healed, but of course yesterday a small blood blister appeared (but which looks gone now). And I have broken skin on the nipple that was not originally affected – never was a blister, I don’t believe, but of course looks like one’s lip would during the weeping stage of a lesion (just raw) – however, has been broken for a week now and is not crusting over. The broken skin is more likely just due to irritation from the pump/suction – and is not healing because I keep reinjuring the area with continued pumping, but again, I am paranoid.

    I guess my question is – is there a point (after 6 weeks, after 8 weeks?) at which I can feel safe that even if my son were to be infected with the virus via my breast/milk, he would not develop any complications? I have struggled horribly with the dilemna of whether to just go ahead and move him 100% to formula and let my milk dry up, to be totally safe, or go ahead and give him my milk (even if just pumped; I am not even sure he would go back to the breast at this point), which of course I know is supposed to be best for him, but again, I am so worried about infection.

    Thanks for any help/guidance you can provide!

    • #45 by Jill Rogers on January 21, 2014 - 17:02

      I neglected to mention – the lesion on my breast was not cultured, but looked/felt/wept (oozing fluid)/crusted/healed EXACTLY as a blister on my lip would.
      Also, I first noticed the blister on my nipple when pumping on a Wednesday morning, and by that night I had tingling in my lip, as well – and a full blown cold sore by Thursday morning, which indicated to me that the virus was very active in my system (I also had a small outbreak on my lips not long after delivery – again, I rarely get outbreaks anymore, but given stress, lack of sleep, lowered immune system (I lost a good amount of blood during delivery and my hemoglobin tanked, requiring a transfusion)), I wasn’t surprised to see the outbreaks crop up).
      Thanks again for your time!

      • #46 by Nick Bennett on January 21, 2014 - 17:31

        Hi Jill – thanks for posting, but I cannot safely offer specific medical advice online. Your best bet by far is to talk to a doctor in person who can properly go over your case. In general my level of concern for HSV in babies is much less the older they are, but that’s not to say that infection cannot occur (it can) or that sometimes those infections can’t be bad. But I want to offer neither unnecessary concern nor inappropriate reassurance!

        Sorry – I hope you understand.

        Cheers

        Bennett

      • #47 by Jill Rogers on March 20, 2014 - 17:15

        Nick,
        Thanks for your reply to me on 1/21. And I definitely understand about your not being able to give patient-specific advice online.

        All the drs (infection disease and pediatricians) with whom I’ve consulted have encouraged me to continue breastfeeding, in the absence of lesions on the breast/nipple (even if/when I have outbreaks on my mouth, which have been occurring with quite a bit of frequency in this postpartum period, although in the past 15 years or so, I’ve had outbreaks very infrequently!).

        Because I’ve felt that the virus is so active in my system, I have not been exclusively breastfeeding my son – I have given him some (pumped) breast milk during times when I have no outbreaks on my mouth (and so have been less worried about a lesion cropping up on my nipple).

        Anyhow, my son is now 14 weeks old. I was wondering if you could answer just a general question…
        The Red Book states:
        Children Beyond the Neonatal Period and Adolescents. Most primary HSV infections during the period of childhood beyond the neonatal period are asymptomatic. Gingivostomatitis, which is the most common clinical manifestation of HSV during childhood, is caused by HSV type 1 (HSV-1) and is characterized by fever, irritability, tender submandibular adenopathy, and an ulcerative enanthem involving the gingiva and mucous membranes of the mouth, often with perioral vesicular lesions.

        I understand that if my son (who is just over 3 months old now) were to present with symptoms, he would likely still need to undergo acyclovir therapy. My question, though, is this: am I understanding the above to mean that an infant past the neonatal period (28 days) may contract the virus but it lie latent (that is, no symptoms, no activation)? I read in a previous comment that you had said if a neonate were infected, symptoms would definitely manifest…but in a child past the neonatal period, might the immune system be advanced to the point where the child could be infected yet not affected?

        Thanks for any insight you can provide!

  24. #48 by Tracey on October 27, 2016 - 18:13

    If a baby was infected with hsv and it was meningitis, would it just get better on its own? Or would the meningitis keep recurring and cause even more damage if lesions were present? If the baby also had recurrent herpetic outbreaks would that just keep causing more damage if it was CNS involvement? Also if there was CNS damage since birth, would it be apparent at 6-7 months of age through milestones or would morbidity not show up until later?

    • #49 by Nick Bennett on October 30, 2016 - 22:06

      Newborn’s with HSV in the spinal fluid generally don’t get meningitis (inflammation around the brain), they get encephalitis (inflammation IN the brain). They usually die if not treated. Survivors are very badly affected, and may have delayed motor skills, hearing loss, vision loss, or other issues. There is always the concern that a child may have recurrent outbreaks that affect the brain, and that’s why these days babies are often put on oral acyclovir for 6 months after the initial treatment for HSV encephalitis, just in case. Usually, if there are major issues, they’ll show up by 6 months or so. Anything that doesn’t show up until later would be hard to know if it was from HSV or something else.

      • #50 by Tracey on October 30, 2016 - 22:39

        I thought babies with hsv can also have meningitis, viral meningitis.. If that occurred would it just get better on its own in a newborn? I have a concern that my child was exposed to hsv at birth and it has been misdiagnosed.. I understand that you don’t give advice or personal recommendations, but I’m just a very concerned parent about my child who was possibly misdiagnosed.. They performed HSV PCR swabs from 5 different mucosal locations at 1 month of age and believed that she looked too good at 1 month to perform any further testing.. But I keep reading what you stated about not performing full work up just because the baby looked too good.. And it’s stuck in my head since.. They then drew blood and performed a PCR of blood and did an igg and igm at 3 months.. Which I know is also not as effective in the neonatal stage.. My concern is that my child has been misdiagnosed this whole time and the damage has been done 😦 once again I really appreciate for responding!

  1. A great article on neonatal HSV transmission « Academic OB/GYN

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: