My story on herpes and my infant with neonatal herpes

pregnant

This story was sent to me so that I could repost it to share with you on my herpes stories pages… I thought it would be nice to switch things up a bit and post a few true stories on my herpes blog so my readers could find them this way too. If you would like me to post your story please send them to me as I would be more than happy to. You are more than welcome to share a photo and if you prefer to remain anonymous that is fine too… we can just go by your first name only. Ok, this next story now begins…

I have had the herpes simplex virus type 1 cold sore since 2002. Being that type 2 is genital herpes I thought that was the only type of herpes that could be contracted from sex including oral..I was wrong. My ex boyfriend had cold sores on his mouth and without knowing he had them at the time, we had oral sex and that is how I got the disease. I didn’t know it at first. It was a few years ago so I can’t remember all of the symptoms. I just remember a burning and itching feeling down there as well as very bad chills and a fever. I went in to see the gyno and she diagnosed me with herpes type 1, vaginally.

I was devastated and depressed but I got over it quickly because I realized just how common this virus is! Then a year later I met my now husband and we got engaged a year after meeting. We planned our wedding for exactly a year from when he proposed. We then got pregnant and I was ecstatic. This was our first little bundle of joy and we were sooo happy!

Well being the worry wart that I am, that led me to think about neonatal herpes. I was aware of it from doing research on the Internet. I told my gyno. at every visit how worried I was and expressed my concerns. They blew off my concerns with “Oh don’t worry, neonatal herpes is very rare” and that was that. Even though I stated time and time again I wanted a C-section because I heard the baby would have a very very low chance of acquiring the disease if I had the baby via cesarean.

Well about a month before I delivered, the gyno prescribed Valtrex. I thought she prescribed Acyclovir which is a more mild form of the anti-viral med. So I went back a couple weeks later and she gave me an Acyclovir prescription. I took that medicine for 12 days up until the baby was born. I delivered vaginally per doctor’s advice, going against my gut instinct. Well I had NO SYMPTOMS of any herpes outbreak coming on. Truthfully, I even forgot about my whole worrying about the baby getting herpes when I was in labor. I remember the doctor telling me she was putting a fetal scalp monitor in me to monitor the baby’s heart rate I believe. But later on I read that if you have herpes DO NOT let the doctor use a fetal scalp monitor, because that punctures a little skin of the baby and the herpes virus could seep in.

Well, a week after we had our beautiful baby home I noticed a red bump on his leg that later turned into a blister. I honestly still didn’t think anything of it and took him to the doctor for his normal check up and I pointed out the blister and the doctor mentioned to me that she thought it was herpes. My heart sank at that point. All of the worrying before I had the baby came flooding back. It was like an ocean of worry that I had built up all 9 months of my pregnancy flooding me and knocking me down, when I heard those words: “I think it’s herpes”.

Without even having the blood work or any of the testing done I knew in my heart my baby had contracted the cold sore virus from me. We took him to the hospital and they did spinal taps on him and hooked him up to an IV. It was a nightmare I was living. To see my beautiful baby in a hospital, potentially dying or severe brain damage because of a disgusting disease picked up during sex. The thought of that just made me so sick- I felt the world was coming to an end for me..

My husband stood by me the whole time and was there standing strong for both me and him. Luckily he knew I had the cold sore virus and he knew how I always went to my gyno during my pregnancy scared shit. So although we were both scared and horrified, it wasn’t a guessing game as to how he got it. We stayed with our baby for 2 days before we got the results. They came back that he had HSV 1 skin eye mouth disease. So far the spinal taps came back negative- Thank God, I thank God every day. But at the same time he is now almost 5 months old and doctors say he could STILL get encephalitis or the herpes virus can come out and attack his organs. I am very angry at the gynecologists for not listening to my concerns. She should have never used a fetal scalp monitor on me, knowing that I had herpes. She was very careless with my baby and my body- I truly hate this person. To walk around with hatred is no good, but I have to worry every day about my baby’s disease..that could have been prevented provided I had good doctors looking after me.

This is a warning to all women who have herpes and want to or are pregnant. I don’t want other babies out there getting this virus. Please make sure if you choose to have a vaginal birth that the doctors don’t use a device called a fetal scalp monitor. Make sure you request herpes cultures to be taken during your last month of pregnancy to make sure that there is no viral shedding. The virus could be present with no symptoms, known as asymptomatic shedding. I think that is what I had at the time of delivery. It scares me to know that you can have the virus present at the time of delivery and not know it. The doctor can’t do a culture test at the time of delivery because it takes a few days to get the results back.

They say it’s rare for a baby to acquire the disease but it DOES happen. It happened to my baby. If you personally feel it is worth having a C-Section, because that reduces the risk of giving your baby neonatal herpes (There is still a change the baby can get the virus while he/she is in the womb..that is called in utero , meaning they acquired it in the uterus) please get the c- section. I know I will with my next. Although it is a very rare disease, it does happen. 1 in 3000 doesn’t seem like a lot, but if you are the 1 like I am out of the 3000, that ain’t nothing but a damn number. I think because neonatal herpes is so rare, doctors take a pregnant women having herpes lightly… and the consequences to that child are deadly.

Note from Angela:

Obviously I don’t agree that women with herpes should be forced to have C-sections. C-sections are major surgery and should only be used (in my opinion) as a last resort. Furthermore, a baby can not contract herpes while inside of Mom. A mother who has had herpes prior to becoming pregnant shares her antibodies with her unborn child. For those who have yet to read my herpes pregnancy story you can do so here…

I’m sure Laura shared her story as best she could but I’m also suspecting that there might be parts of her story she doesn’t understand. Even so… I went ahead and decided to go ahead and post it because after all… it’s her story to share. If you have read this story and would like to share your opinion as well, feel free to leave a comment.

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76 thoughts on “My story on herpes and my infant with neonatal herpes

  1. Hi Nichole. Thank you so much for responding. How old is your son, and how is he doing now? Has he had any recurrent outbreaks? Do the doctors say that he should be ok at this point? I hope he is doing well!

  2. In regards to Heather’s comment on June 4, 2010, I too believe that HSV 1 and 2 can be passed in utero. I’ve read lots of medical journals which discuss HSV being passed in utero. But this is very unlikely.

  3. If a woman with genital herpes has virus present in the birth canal during delivery, herpes simplex virus (HSV) can be spread to an infant, causing neonatal herpes, a serious and sometimes fatal condition. Neonatal herpes can cause an overwhelming infection resulting in lasting damage to the central nervous system, mental retardation, or death. Medication, if given early, may help prevent or reduce lasting damage, but even with antiviral medication, this infection has serious consequences for most infected infants.

    While neonatal herpes is a serious condition, it is also very rare. Less than 0.1% of babies born in the United States each year get neonatal herpes. By contrast, some 25-30% of pregnant women have genital herpes. This means that most women with genital herpes give birth to healthy babies.

    Babies are most at risk for neonatal herpes if the mother contracts genital herpes late in pregnancy. This is because a newly infected mother does not have antibodies against the virus, so there is no natural protection for the baby during birth. In addition, a new herpes infection is frequently active, so there is an increased possibility the virus will be present in the birth canal during delivery.

    Women who acquire genital herpes before they become pregnant have a very low risk of transmitting the virus to their babies. This is because their immune systems make antibodies that are temporarily passed to the baby through the placenta. Even if herpes is active in the birth canal during delivery, the antibodies help protect the baby. In addition, if a mother knows she has genital herpes, her doctor or midwife can take steps to protect the baby.

    Herpes can also be spread to the baby in the first weeks of life if he or she is kissed by someone with an active cold sore (oral herpes). In rare instances, herpes may be spread by touch, if someone touches an active cold sore and then immediately touches the baby. Again, simple precautions can be taken to protect an infant from this type of exposure. To protect your baby, don’t kiss him or her when you have a cold sore, and ask others not to. If you have a cold sore, wash your hands before touching the baby.

    H/T: ASHA

  4. My daughter is 11 months , I contracted genital herpes sv2 when I was 2 months pregnant. My baby has had litlittle bumps on her hahands & little bymps on the bottom of her leg , I keep crying be I dont know what it is , shes also been having fevers & I looked up pictures of herpes on the baby , she has the SAME little bump >on her tummy< as the photo says they would have it if they were contacted , im so scared , what does this mean , Even though , I dont recall having ANY noticable outbreaks ?
    Please help

  5. Stop crying, get yourself together, and make an appointment to take your daughter to see her pediatrician. Sometimes babies get bumps or rashes. It happens all the time. It doesn’t mean your baby has what you have.

    Your baby is not an extension of you. Yes, you’re her Mom but she will be her own person with a completely different set of circumstances. Your herpes condition doesn’t have anything to do with her.

    Stick to the facts and get it together. Don’t let your imagination get the best of you. Never make any decisions when you are upset and always seek the help of a trained professional.

  6. Hello,
    I am currently in the same situation and could use some advice from others who have gone through this. My son is 2 months old and just had his first outbreak on his chest 2 weeks ago. He came back hsv 2 positive. My boyfriend and I were both shocked because we never new we had the virus. My question is did your childs outbreak stay in the same spot. Will my son continue to have outbreaks on his chest? Also did your child develop normally. My sons virus is luckily so far limited to his skin. Im so worried about him living a normal life

  7. Hello Bri. I am sorry you are going through this. My son’s outbreak is always on his head. We put a bandaid over it as soon as we notice him scratching at it because we have a 5 month old and we don’t want him to spread it to her or to other parts of his body. So far so good. We did have to put him on valtrex from the compounding pharmacy. Acylovir tore up his tummy and did not seem to help the outbreaks. He was getting outbreaks on top of each other. If that happens to your child under 2 please skip the pediatrician and derms, just go straight to the pediatrician infectious disease specialist at a major hospital. The other regular Dr’s are not able to help and this will save time, money, and get help for your little one much sooner. My kiddo is about to turn 2, is completely normal and a happy little guy. Tip: there are bandaids that are completely clear ( so you can see what is going on underneath ) They stay put, but are also removed easily (without too much discomfort) called Tegaderm Film. We love them. Good luck and again so sorry to hear about your little one. As far as a normal life don’t worry about him fitting in. We struggled there as well. We just keep everything covered with the bandaid and tell “people” that he has a contagious rash and to stay clear of it. Poison ivy is our favorite go to excuse even though it is not contagious it will still keep people from wanting to come into contact with it. :) Im here if you have any other questions

  8. Thank you so much! You don’t know how nice that is to hear. I have felt so alone in all of this and have been looking for someone to talk to. Luckily my pediatrician use to work with the infectious disease Dr. at one of the best childrens hospitals in the country. We are currently at that hospital as he is on Acylovir for 21 days. I’m struggling with guilt, not only did he get this virus, he was 10 weeks premature so all in all we have been in the hospital 8 weeks out of the 10 weeks he has been alive. My son has had 2 outbreaks and both have been in the same spot right under his chest. I overthink everything. How do I tell him when he is over? Will it affect him in school? Will he be able to have a normal relationship? I have searched the internet for people with similar with experience and am so relieved to have found this

  9. Thanks Bri
    So glad I could help. I wonder those same questions as well. One my son’s doctors made a statement that helped me feel more relaxed. He said that HSV isn’t really a big deal for older kids and that many people who have it were exposed by the time they were in kindergarten. The only difference is how they were exposed..from kisses or drinking after others and ect.
    So sorry your little one has spent so much time in the hospital. I hope he will get to come home soon. I am also very glad that he had a doctor that discovered his HSV in time for him to get treatment, especially considering you didn’t even know you had the virus. It sure seems as though you and I are the luckiest of the unlucky. And I am extremely grateful for that.

  10. I am very greatful as well. Did your sons doctor say tHat in the future he will coontinue to have outbreaks on his head? Im just wondering, because my son has hsv 2 and its on his chest. Will it be on his genital area when he is older? One of my doctors said she thinks he will just get coldsorrs on hos mouth in the future, but I was wondering what your doctors told you

  11. Hi Bri

    My son only gets them on his head where they screwed in the internal monitor during delivery. It is my understanding that future outbreaks usually occur in the same place the virus was first contracted ( I am not a Dr) Unless he spreads the virus to another part out his body by scratching or rubbing his outbreaks should stay in the same spot. That is why we are so diligent about putting bandaids over our little guy’s outbreaks. They don’t understand why it is so important not to rub or scratch, they just know they feel itching or burning.

  12. Hi nichole,
    Does your son go to daycare? Im wondering if because he has this disease if he wont be able to go to daycare or be around other kids.

  13. Hi Bri

    That is a very reasonable and conscientious concern. Hsv 1 and 2 are very common and lots of children have cold sores on their mouths. If you were to put a bandaid over your little guys outbreak and keep a shirt on him you would actually be protecting the other children from contracting it more so than a parent who sent their little one to daycare with a cold sore on their mouth because the outbreaks on mouths are almost impossible to cover up. I am a sahm so my little man doesn’t go to day care but he does go to the playground and has playdates. I just make sure to cover it up and I always pack a few extra bandaids in my diaper bag. I am also very lucky that he absolutely loves to wash his hands which is very helpful. I also have a 5 month old and I take those same measures at home to protect her as well. When she starts going to the playground I will be much more concerned about parent who chooses not to vaccinate their children than I will be about her playing with a child who has a cold sore.

  14. Hi nichole,
    Yes I agree with you about the vaccines. There is just a huge stigma with hsv even though most people have at least one type. Thank you so much for awnsering my questions amd making me feel like im not alone in this.

  15. Hey my name is greagory me n my mom is being a care giver to my lil,cousin he is 7months and have herpies on,his genitals and chest what should i,do to,make sure i,dont,catch it i,try so hard not to touch him but i,feel bad about it and he,keep,coughing and throwing up what do,that mean ????

  16. I can understand your concerns. Keep him covered up with gauze or a band aid and put him in a onesie. This will keep you from coming into contact with any of the blisters. Wash your hands with soap and hot water if you do come into contact with a blister. Wash his clothes in hot water and dry them on high heat. Lysol spray states that it will kill the herpes virus on non porous surfaces.. please check out the instructions and warnings. You could also wear disposable gloves when you change his diaper, clothes, or bandages. He has been though a lot already and every baby deserves cuddles and playtime. I think it is wonderful that you are searching for safe ways to give him the attention he needs…seems like he has a great cousin! Please make sure to keep him covered up if he is going to be playing with other babies.

  17. Nichole- He is doing amazing. You wouldn’t even know he has the virus. He hasn’t had an outbreak since ( knock on wood) and for being premature he his over achieving at every development milestone. I have come to terms with the fact he has the virus and realized that although yes it is serious for infants, when he gets older it is not that big of a deal. Society just makes the virus out to be something much worse then it is. He is also doing great with the acyclovir. Hows your son doing?

  18. I am so glad you and your little man are feeling better! Go mama! Look at you all glowing in your new mommyness. I am so proud very of you both! We are doing great, thanks for asking.

  19. Nichole- we have our first infectious disease pediatrician appointment tomorrow. Any advise on what to as?

  20. Nope yall are in great hands now :) Maybe ask for a back up prescription to be on file in case the one he has starts upsetting his little tummy. You might ask the Dr which probiotic they recommend for a little one taking medicines.

  21. Hi I had HSV-2 for 10 years before my daughter was born and every rash/ bump I see (might even be regular diaper rash) I worry that I have passed on my virus to her :(. I have read that because I have had the virus so long I would have passed on antibodies that would have protected her during the birthing process (I gave birth vaginally) but I still worry… My question is this – bc I have the virus and as her mother I passed on antibodies to her (for her protection) – how does the hsv test they administer differentiate between the antibodies I passed on for her protection vs antibodies that show active virus?? Because the test looks for the presence of antibodies? And one you have the antibodies you have them for life right? Please help.

  22. Hi Janine
    My son’s first Dr did actually misdiagnose him with cradle cap (at 4 months old). However the rash got worse over the next couple of days and we took him for a second opinion. If you are really concerned, go for that second opinion. If HSV is suspected you will be sent to a top notch Childrens hospital in your area. They will preform a spinal tap (which is heartbreaking) they will also take blood and take swabs of your baby’s rash, and also eyes, nose, mouth, genital, and anus. They are supposed to change gloves and swabs in between every location. All of these swabs will be sent off to be cultured, this takes about half a week give or take. If the spinal, blood test, or cultures come up positive then your baby will receive the treatment he/she needs. This can range from a hospital IV treatment for 21 days to an oral medication given at home. They will also be able to tell you which type of HSV your baby has contracted. HSV really is an easy rash to identify visually, especially if you already have experience with it.

  23. Your right about the antibodies and if you are breastfeeding you are passing antibodies to your baby still. I dont think your baby will test postive unless they have the active virus. I no my baby has the virus and I still get nervouse about my baby getting another outbreak. I didnt carry full term and didnt no I had tge virus therfor he wasnt protected. If you didnt have any scalp monitors or a prolonged breakage of your water chances are your baby is fine. Saying that there is always a chance so trust your gut feeling because a mommy knows if there is something wrong with her baby. Nicole is right a herpes outbreak is hard to mistaken for a rash, its a blister filled with fluod. The doctor can test the fluid to see if is the virus as well

  24. Last year I noticed a bump on my penis. It did not grow. It babrely irritated me. I didnt have any blistering or discharge but still went to the doc and they took a look and said it wasnt nothing to worry( such assholes dont know shi*) and me and my wife have a 8months old now who was born healthy.I didnt think I had herpes since I had no outbreaks or the bump didnt grow. Now I noticed a new bump small and clear on my palm of my hand. Im scared my baby caught it from us now life is over. Dont know how to feel or what to do :(

  25. O would call your doctor. Figure out what is on ypur hand. Your baby is 8 months old which means her immune system is much better then that of a newborn. Life is not over

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