Recurrent genital herpes due to HSV-1 is uncommon, and especially rare after 8 years. The statistics are that about 40% of persons with initial genital herpes due to HSV-1 have no recurrences at all; another 40-50% have only 1 or 2 recurrences over the next year or two, then nothing; and only rarely does someone have ongoing recurrent outbreaks. Similarly, asymptomatic viral shedding is rare in genital HSV-1 infection.
The odds are very highly in your (and your baby's) favor. Most neonatal herpes, especially the serious cases, occur when a woman acquires genital HSV infection during pregnancy, especially during the last 2-3 months; the risk with recurrent herpes is very low. But thre risk isn't zero, and there is a disproportionate risk for HSV-1 compared with HSV-2.
The important thing is to tell your obstetrician about it; do not withhold the diagnosis. The risk is very low, but still the doc needs to know in order to be on the lookout for signs of reactivated infection as you approach your delivery date. They'll keep it confidential--but if in doubt, tell your doctor you are especially interested in keeping it private. On the other hand, don't be obsessive about it. Trust me--your Ob has dealt with herpes in pregnant women lots of times. And these days nobody considers it anything special, especially for HSV-1 infection.
Because you probably aren't shedding HSV-1 from your genital tract, you probably have nothing to transmit to your partners. But yes, if they have had oral herpes, they will be immune from catching your HSV-1 infection.
Thank you Doctor. By no means would I ever want to put our potential baby at risk. Do you know where else I could find info on genital type 1 HSV? Like I said, when I speak w/ my OB she always talks about outbreaks and the risk of spreading it when I don't have outbreaks (which contradicts what you said above and what I have read- that HSV gential 1 rarely sheds) so I don't think she understands the "difference" of type 1 and 2. I assume from your answer that being that I have type 1 that lessens the odds even more then if I had type 2 for spreading that to our baby.
Thank you again. I feel more releived and less scared about trying to conceieve.
I too have had hsv1 genitally. I got it the same way you did (oral sex) but I was pregnant at the time. My baby was fine. I also had another baby and she was okay too. They did check for outbreaks at time of delivery. if there had been an outbreak they would deliver the baby by c-section.
I'm sorry I just re-read and you said you had your babies vagnial. Can I ask how private your doctors/nurses were? I'd like to have my Mother in the room with us during but I'm concerned that the doctor may mention this.
Sandie05, most health care providers truly do their best to keep patients' private problems private, but that doesn't typically extend to other health care workers involved in a patient's care. For example, if s/he inspects you for herpes lesions in the delivery room, don't expect him to not tell the delivery room nurse what s/he is looking for. If you think about it, absolute confidentiality isn't possible. For example, if s/he sees a lesion that needs testing for herpes, the laboratory requisition will say herpes is suspected, and the requisition will be seen by people in the laboratory. Similarly, your health insurer knows everything in your medical record. (Well, "knows" is too strong a word. But they have access to the information.)
The recently implemented health information privacy law (Health Information Protection and Accountability Act, or HIPAA) has the world's stiffest penalties for disclosure of private health information to unauthorized persons without the patient's consent. But HIPAA explicitly authorizes and expects disclosure to all persons involved in providing care, such as other doctors, providers' office staff, insurers, etc. In today's health care world, that's just the way things are. Which, of course, is why HIPAA was enacted and why the penalties for inappropriate disclosure are severe: You doc can tell the nurse, but if one of them then tells a mutual friend that you were tested for herpes, the fine for first offense is $5,000. Trust me, all people in the health business know this, have been trained about it, and take it seriously.
Bottom line (again): Never hesitate to tell your doctor what s/he needs to know, with confidence that the information indeed will go no further than it needs to go in order to give you the best care.
And a final word of reassurance: The instances of inappropriate disclosure of STD (including HIV) information by health care providers have been extremely rare. You really don't have much to worry about.
Sorry for more information than you probably wanted--but I suspect your implied concerns are shared by many, and I hope this is useful.
With apology, I missed your comment about your mother being in the delivery room. You definitely should discuss this with your doctor, specifically to request that any check for herpes lesions be done when she isn't there to to not mention the possibility in her presence. I'm certain s/he will be sensitive to your request.
primary outbreak in nov '97 was AWFUL (thought I was dying) One minor recurrence in Oct '99. Ive been okay since (touch wood) I delivered first daughter in march '98 and nobody (doctors or nurses) mentioned a thing about the HSV. With the second daughter (born 8/00 the doctor recommended suppressive therapy but i didnt feel it was necessary cause I didnt have frequent outbreaks, so he didnt push it. when I delivered last baby they were a little more careful. the ob and a nurse came in with one of those big bright lights and checked down there thoroughly (I wanted to die of embarrasment!!) but they didnt see anything so i delivered vaginally. I didnt want anyone around for that other than the docs or nurses, so i just had everyone leave. i was little embarrassed with it though cause they give the nurses and doctors a little kind of warning card that said i had hsv so that kind of sucked, but there really wasn't much i could do about it. at the time of my initial outbreak, my mom knew about it cause i was so sick but i told her i got it from touching a cold sore on my lip and then touching down there. i know how i really got it (oral sex) but id never tell her that. and i swear the doctor that cultured the blisters the first time actually told me thats how i got it. as for my kids' dad, he was the idiot who gave it to me so he knew too. I think you'll be fine as you don't seem to get a lot of recurrences, but even if you would, they'll just deliver by c-section. i know how you feel about the embarrasment. i remember with my first outbreak my doc came in (a guy doc) with a young resident doc (also a guy.) it was just mortifying. i wish you luck with ur future little one:)
Thanks Pan! Your really make me feel at ease! Its nice to talk w/ someone that has the same type as I do with similar experiences. I dread the embarrassment because we live in a rural town so people will treat you awful- but to have a heathly baby I'll endure it. We are going to start trying this September. I myself am hesitant about taking supressive meds(especially since its will be 6 years since my last and only reoccurance) so I'm glad to hear it worked out for you without them. Can I ask a few more questions and then I promise to leave you alone? I've been told to not have them hook up the fetal heart monitor to the baby's head during delievery but to ask that its hooked up to your stomach. What did you decide to do? Also, having an episodomy/tearing doesn't effect anything right? Its only lessions to be concerned about right? Do they give the baby anything after delieverly "just in case"?
Hi! I actually DID pass on herpes to my twin sons because I had NO idea that I had contracted hsv-1 during my pregnancy (I spent the last two months of my pregnancy IN the hospital!!).
I would say that it is very wise not to allow internal fetal monitoring unless there is a VERY compelling reason to do so. But with that said, usually they don't attempt an internal monitor unless that is the case. Also, talk very specifically with your physician if they want to artificially rupture your membranes. The risk of transmission increases if your membranes are ruptured more than 6hrs before delivery.
But remember, even if you DID deliver vaginally WITH an active outbreak (which your doc will not let you do) the odds of your baby contracting the virus are still very low because you had an established infection prior to your pregnancy.
I have talked with my doctors and my sons' doctors VERY extensively about the implications my dx has on any subsequent pregnancies. We have discussed epesiotomies and prophylactic acyclovir in infants. What they all agreed on was that an epesiotomy does not increase the risk of transmission, since the virus is not blood-borne. The exception to that is if there is a lesion hidden by the perineum at delivery, which they said is very very uncommon (especially since I have never had an outbreak). They also said that at one point prophylactic treatment was considered for infants born to mothers with hsv, but that the benefits really didn't outweigh the risks considering the very low incidence rate of neonatal hsv. They told me that if I have another baby, they will monitor my babies very carefully for signs and symptoms and possibly do a CFS PCR and surface cultures depending on the physician, facilities, and my consent. I would not consent on the PCR unless there were strong suspicions.
I would definately be sure that the pediatrician and nursery nurses are aware that you have herpes. In hindsight, my sons had all the symptoms of neonatal hsv, especially my oldest who developed encephalitis. But they were also premature, and with my lack of symptoms, the question was never raised. Had they known that I had herpes, they would have never discharged them and they would have received treatment much sooner.
Really though, I just can't say enough how low the risks are to you and your baby. Good luck!
like I said, I had no clue I had herpes so my delivery team didn't know. I honestly have NO doubt that I would have received the same excellent care, however.
My sons spent weeks in intensive care units though and LOTS of people there had to know (especially since it is a teaching hospital). I felt like our privacy was VERY well respected there so far as the herpes diagnosis went. The doctors were incredibly compassionate and if anything, we got better treatment, not worse. The physicians we worked with made it clear from the beginning (and I mean the beginning...from the moment they shook our hands) that there was NOTHING to be embaressed or ashamed of. HSV, unfortunately, is the result of normal and healthy sexual behavior and is certainly no reason for any different treatment or to feel embaressed. My family and most of our friends all know that my babies have herpes and that they got it from me and honestly I have never regretted letting them know.
I hope that you receive the same respect and consideration that my family received.
Thanks for your response- you just offered me tons of info! But I do have some more questions if you don't mind. You said you got HSV-1 during pregancy but didn't have any symptoms so how did your babies get it? The reason I'm asking is if your babies got it and you had no symptoms how can I be sure a baby of ours wouldn't if I was deliverying wihtout on outbreak? I also had a question on artificially rupturing membranes (I assume that's induced labor when they break your water). What is the risk? What causes this risk?
Its been so many years since I've had an outbreak (I had the initial and one recurrent) but I've read when your preganent your immune system is low and I can have outbreaks. I'm nervous that I would have them again and cause harm to the baby but I also hope that since its been so many years without them that it won't happen. Have your doctors talked with you about this?
How are your twins now? If you would decide to have more children and the baby was delievered w/ no symptoms do they have a test or a treatment they would give automatically to them? Or is that what you were describing above that the risks outweigh the beneifts?
My babies got HSV from me. Researchers estimate that over 70% of hsv infected babies contracted the virus from mothers who had NO IDEA they had herpes! I just never had an outbreak with my primary infection. I was really surprised to read how common that is.
You and your baby will be at less risk than I was. With a primary infection, you shed more of the virus. You shed it for a longer period of time. You have fewer antibodies. And because I contracted it during the end of my pregnancy and b/c the boys were premature (34wkrs) I had less time to pass the antibodies onto them. Studies estimate that if you were to have asymptomatic shedding of an established infection then your risk of passing the virus onto the baby is still only about 1%. When you consider that the risk of birth defects is 3% (please forgive me! I don't mean to freak you out...just offer perspective!), you see how low that risk really is. I mean, if you had 100 babies and you were shedding during every delivery, only one would have hsv. Those are great odds.
As for rupturing the membranes... It is certainly okay to be induced if you and your doctors choose to go that route. An induction/augmention really has no influence. But you will want to talk to your doctor about breaking your water and what they will do if your water breaks spontaneously. The membranes protect the baby from all kinds of things, including infection. If the baby goes without that protection for too long (generally, for hsv, 6 hrs or less is considered safe) then the risk of transmission is greater. In my case, my membranes were artificially ruptured so that my oldest could have an internal monitor (BOY...if we ONLY knew!!!). They were ruptured for almost exactly 6hrs before I delivered.
I don't remember now, you said you have hsv-1? If you have hsv-1, then the risk of recurrence with your history is low. HSV-1 prefers to hide out in the trigeminal ganglia, which is a nerve bundle near the face. When we get hsv-1 genitally, it hides out in the sacral ganglia, a nerve bundle near the pelvis. Because this type of herpes isn't specifically adapted for that environment, it doesn't reactivate frequently. Did you say you will be going on suppressive therapy? I think that with your past history of very few outbreaks and suppressive therapy you will have reduced your risk to nearly nothing. I am not a doc, but my sons' Infectious Disease doctor told me that b/c I never had an outbreak and I have hsv-1, that the odds of this happening again are "not zero." By that he means that they can never say there's NO chance, but the risk is so small with an established infection and history of few outbreaks that he couldn't even measure it.
My twins are doing very very well now. One has some developmental delays, but like I said...they were preemies. So it isn't surprising. Everyone agrees that you would NEVER guess what they had been through! Thank you for asking!
When I have more children they may do surface cultures on the baby(ies). They just use a cotton swab and culture specimens from the eyes and mouth. We discussed that some pediatricians would want to do a PCR (polymerase chain reaction) on spinal fluid because one of my sons had herpes encephalitis. BUT, that requires a lumbar puncture (spinal tap) and I will not consent for that unless my future children begin to show symptoms. They don't treat it unless they suspect an infection. Neonatal herpes is treated with IV acyclovir. It is REALLY safe for infants, but it does have risks. It can crystalize in the kidneys and it can cause the nutrifil (white blood cell that fights off bacterial infections) to drop in SOME patients. They don't want to risk that in infants. One of my boys' nutrifil count got down to 200, it should be 1500. I wouldn't want a healthy baby's immune system compromised like unless we really suspected herpes.
I may have already said this, but be sure to talk to your pediatrician about this. Had my sons' pediatricians known that I have herpes (which they would have, if I had known) then they would have gotten treatment sooner. My oldest was showing signs and symptoms before we ever left the hospital, but it was attributed to his low birth weight and prematurity. Also, his first lesions (which formed at the sites where the internal monitors had been) did not look at all like herpes. It just looked like the pricks from the monitors were infected. Had they known, they would have suspected herpes right away. Instead, they thought it could be staff and he didn't get treatment until nearly a week after the lesions showed themselves. Thank goodness his pediatrician is so excellent and suspected herpes anyway and got him the necessary treatment when he did! Anyhow...just be sure the pediatrician knows about the hsv so they can monitor your little one!
I think I covered all your questions. Feel free to ask. I'm not an expert, but I have by necessity learned a LOT about it!
I apoligize, I do have one more question. You mentioned one of your sons has herpes encephalitis, is that common? Is it more common when you get hsv while pregnant? Did your doctors say if that was a risk for any of your future babies?
Again, I cannot thank you enough for all the information you are sharing with me. It does make me feel more comfortable and confident about having a baby.
Oh...as for risk to my future children...my risk to future children will be really low since I now have an established infection and I have never had an outbreak. Because I passed on herpes asymptomatically, I would be pretty nervous about it happening again without symptoms. So I WILL go on suppressive therapy for my future pregnancies. But I can totally understand not wanting to take meds during pregnancy and it sounds like a good decision for you. my concern is just that i had no idea I had herpes when they were born, what if I didn't know I was shedding when my next babies are born?
and yes the risk is highest to moms who contract herpes during the last few months of their pregnancy. The fact that you already have herpes before even trying to conceive gives you and your baby the best chance at a healthy outcome!
Thanks so much for taking the time to inform me!! Yes, I do have type-1. I got it 8 years ago from a cold sore during oral sex and I've only had one reoccurance which was 4 years ago. I live in a more rural area so doctors aren't the kindest about this. I've read so much information about the differences of genital 1 vs. 2 and the doctors don't seem to understand that. My current doctor even said to me that I can't have type 1 on my gentials but I assured her yes I did (culture test). So hopefully you can understand why I'm branching out online.
As for suppressive therapy, I've read that type-1 on the genitals since its not on the site of preference rarely sheds and being that when we do have a baby (hopefully next year) it will have been 5 years since my last and only outbreak (and 9 from the inital) that I don't want to take suppressive therapy during my pregnancy. I'm just nervous about taking medicine while pregnant. I certainly will have the doctor informed about me because even though the risks are low its still not a risk I'm willing to take.
I thank you again for all your information! If you know of any other sites I may find helpful for type-1 and pregnancy I would greatly appreciate it. I'm glad your boys are healthy and I hope and pray I can have the same outcome!
Encephalitis is just a complication of neonatal herpes. Babies can have it in their skin and/or eyes and/or mouth (SEM disease), in their central nervous system (CNS disease) or in multiple organ systems (disseminated disease). My oldest had disseminated neonatal hsv-1 that infected his central nervous system, including his brain. He didn't have any encephalopothy though, meaning his brain is still intact and didn't have any parts that died. My younger son had only SEM disease. In the little bit of info out there on twins, their doctors said that it is common for Twin A (the twin that is closest to the "door") to be sicker b/c they spend more time engaged. Also, he had breaks in his scalp from the monitors. He was monitored internally b/c he was so low that they couldn't keep him on external monitors, and with twins it is dangerous not to have continuous monitoring. My younger twin didn't have any problems staying on the monitors, so he never had internal monitoring.
Anyhow, like I said, the encephalitis was a complication of his herpes. It is usually very devestating to infants, so we are incredibly blessed that he recovered so well! Actually...since my other posts, we found out that he is caught up developmentally and is no longer delayed!!! That news means that we will just have to wait until he starts speaking and going to school etc before we have to worry again!
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