Hi, how is everyone doing? I hope good, or at least strong. I think that I need to tell my story to everyone, because the more that knows, the more life?s we can save. I am sorry if this is long, but it is worth the time to read.
Well to start off, this is only a little bit of my story. This story is actually about a beautiful baby boy named ETHAN that has stolen the hearts of everyone that he has met. This is the first time I have spoke about the join, the pain, the joy, the pain, and more joy and pain and finally joy.
I found out I was pregnant in the end of August of last year. The doctors ran all their usual test that they do and told me that he was a healthy baby. Through my pregnancy every thing was, I was fine. I worked until I was admitted into the hospital. When I was 29 1/2 weeks I woke up and feel like I was peeing on myself, not knowing what it was (my first child) I went to work. About half way through the day the water did not stop, it just keeps coming. I decided to go see my OB doctor. He checked me and told me to go to the hospital immediately, because like you guessed my water had broke. I was admitted into the hospital that day. Everything was still fine. Your water can rupture for any reason. I sat in the hospital for 10 days. In that time they pumped me full of steroids and antibiotics to make him stronger. On March 2, 2006 the doctor told me that my red blood count was too high. The hospital induced labor at 11am. At noon I received my epidural. My son was born at 12:57pm by natural birth. It was such an easy birth; I only had to push twice. Ethan Shaw Johnson was born 3lbs8ozs and only 16in long. It sounds small, but for only 31 weeks he should have been barely 3 lbs.
He was so healthy. Ethan was not on anything except the feeding tube and the heat. His lungs were strong, his heart, all his organs. I was so happy. They told me that he would learn to eat and wean off his heat in about 2 to 3 weeks. Being a first time mom I was so happy. Everyday I was there with him. He would look at me and squirm in his bed. My son would actually squirm his way all the way to the bottom of the bed at 3 days old. (I do have pictures if any wants to see, I took them everyday while he was in there) So healthy so strong and starting to suck his own bottle at 1 week old. I was happy.
A few weeks went by and he was growing at a rapid pace. 3 weeks and they were starting to wean him off his heat so he could come home. But like all good stories, something has to go wrong. I arrived at the hospital on March 24 and found that my baby was not moving. He looked dead to me, not moving like he usually did not opening his eyes to my voice, nothing. I talked to the nurse and they said he was like this all day long. They were running test on him. Well a few days go by no change. I come back to the hospital a few days later and he is on the respirator. They tell me that he has Spinal Meningitis. They say that it is very common among baby's that are preterm. I go home look it up and find that 90% of the cause are not serious at all. No damage done, none dead, just a few added days in the hospital. I can deal with that. I still went to the hospital every day just as happy as I could be.
One day out of the blue, my husband?s uncle called me and says he wants to see him. He says he is going to come pick me up and he will drive me up there. (My husband is at work) Now his uncle lives an hour away. Well he picks me up and we go up there. When we get in the nurse tells me that the doctor wants to talk to me. I say ok and wait for the doctor. Me and his uncle sit next to Ethan and wait on the doctor. An hour goes by and the doctor is still sitting in his office. I ask a nurse what he is waiting on and he tells me that, he is waiting on the social worker and a few other important people to come up. Not thinking anything I go back waiting. Another 30 minutes and the nurse comes up and says that they are ready for me. His uncle stands up and starts to walk with me, when the nurse stops him, and says that he thinks it best if he waits for me outside.
By now my heart is beating out of my chest (kinda like it is right now just thinking about it) I go into a special room and there are about 6 people in the room. I hear what I think to be the worst possible news that I could ever hear. "I think it would be best if you sit down" I have a seat and the doctor looks at me and tells me. "Mrs. Johnson your son has Herpes Simplex type 2" (now remember what you felt like when you heard the news) I of course ask in a very tight closed up tone (I'm very good at hiding emotions) "how did he get it" The doctor then tells me that the only way that he could get it was from ME. From ME, I have just given my son, my only child, my life a STD. I am still composed. I don't know very much about it but I do know that it will not kill an adult. So I am still fine. I can't talk but I am fine. I just sit there and stare in space. I finally look at the doctor and he has this look, a look that I will never forget in a million years. It is sad, very sad, like there is something he has to say but even he is almost in tears and cannot talk. We sit there for almost an hour not talking. Finally I get up the courage to ask one question. "And?" The doctor looks at the floor and says "He is not going to make it; we caught it to late the infection has spread to his blood and any day now it will spread to his organs? All I could do was sit there and hold my breath. Finally I just cried. I have just infected my baby boy with a deadly virus.
When I finally got the strength to pick up my head, I could not sit there at look at them. I got up and almost ran out of the hospital. When I made it to the elevator his uncle was waiting for me. He looked at me and knows something was wrong. He asked the normal question "What?s wrong" I looked at him and fell to pieces. How can you just say that? It is impossible. His uncle literally carried out of the hospital and put me in the car. I finally stopped crying half way home and thought of something to say. "There was something in my blood that his blood was rejecting." I went to tell him how the doctors thought he was not going to make it.
You know you think about it and that seems like the hardest thing in the world to deal with, hearing that news. I thought it was, until I got home. When I got there I finally understood the pain the doctor had in his eyes. My husband was home. I stood there staring at the front door to the house until he walked outside. Right way he did not notice, he was saying something about leaving my niece and the kids I was babysitting alone for such a long time. I could not look at him. Finally I walked in the house and called to him to come inside. He came into the room and looked at me for the first time and asks that question that killed what heart I had left. ?WHAT?S WRONG?
I could not say a word my throat seized up and all I could do was fall to the floor and cry.
I don?t know how, but I eventually stopped and got the breath to talk. (That was the moment I lost my mind. I use to be good with words and I use to have a great memory of everything to the last little detail. But after that day everything is lost, everything is just a blur from then on.) I don?t remember the words I said to him but I told him about the herpes. All that is imprinted in my mind about that is his screaming the words ?HERPES? Then I told him about what the doctors said, still not knowing the words I used. After that I remember us just holding each other in the bathroom on the tub just crying together.
That is what I can tell you. You will never know the feeling of sitting there waiting for your baby to die. The only thing I have ever wanted out of life.
Well, to brighten it up, my son, ETHAN SHAW JOHNSON is still with us. The many prayers from everyone that I meet healed my baby. The infection did not spread to his organs. The doctors have no idea why it did not. But I do GOD was with him. He is now 6 ? months old and weights 16lbs.
Now even though he survived, he still has a lot of issues. My son?s brain is over 80% damaged and he is visually impaired. He will never do the things that normal kids do and there is so much that the doctors do not know. At first when I heard this, I was fine about the definite mental retardation, but when I heard about the visually impaired I was (and still am) scared to death. I have never seen a mentally challenged child (or person) that could not see. Sometimes I think that he would have been better off with God. But when I think about it, God would not have left him with me, if he knew that I was not physically or mentally able to care for him. (I thank my dad for that insight.) I love my son more than anything in this world and would not change anything about him now. BUT to all you women out there that is pregnant, wanting to get pregnant, or anything to that extent. Please I am begging you. Please get tested for herpes, Your doctor might tell you that there is no need like so many doctors out there, but make them and if they don?t go see another doctor. I found out later when I dug for information on the internet (I could find no doctors that would answer my questions) that there are only 2 ways that you can transmit this to your child.
#1. Having a herpes sore on you at the time of a vaginal delivery.
(Some sores can be deep inside you were the doctor?s can no see them or feel them)
#2. Being infected with them 7 days before a vaginal delivery.
If you catch the word in both number?s you will see vaginal delivery. If you find out that you have herpes, I beg you to have a c-section. That is the only true way that you are safe from this. Even though there are only about 2500 babies a year in the US, that have been diagnoses with this. I was one and I don?t want anyone to be next. No one needs to feel that pain. Like I said I love my son more than anything, but I do promise that I will never be the same after this. I can not find any state paid (Medicaid/Medicare) doctors that will talk to me. I can not afford to go to a normal doctor because I cannot work any more. No daycares will watch him. (Well and he can not be around anyone sick because his immune system is so low) And I do not trust anyone enough to remember to give him his medications at the right time. (If he misses one he could get the infection right back) Ethan was in the hospital for 3 months and 1 days he came home JUNE 3, 2006. Please remember this story and tell everyone you know to get checked for this. I am going to try to put this on a web page so that everyone will be able to look for it. And if your baby, infant, child has been born with the herpes simplex virus I would love to talk to you. I know I am not alone on this, but I also don?t want anymore to suffer the way me and my husband have.
If you have anything you want to say or you just need someone to talk to my e-mail address is:
Or you can write me at
201 Edith Dr.
Pineville, La, 71360
Hello Ethan's Mommy,
You wonderful brave woman! I just cried reading your post. Obviously, like me, you never had any symptoms. Such an insidious virus this is for all those of you young and in your child bearing years.
I'm 58. I lost my husband to leukemia 10 years ago. I caught H2 from a guy (a medical guy, an Anesthetist - who has a graduate degree and I feel is deliberately ignorant on any details of all this that might inhibit his sex life!) Anyway, he charmed me good and I truly loved him and hoped we had a life together. The things I overlooked and sacrificed to be with that man! He chased every cute hottie 20 years younger than him until I realized I couldn't live like that. Almost 2 year wasted. I've just recently stopped hurting from the rejection of all that, even though I was the one who broke it off. He was with 3 other women within a month of our split and found a gorgeous woman 8 years younger than me. All the women he's been with since contracting the virus have been just fine with the knowledge that he has it!!! Unbelievable. But then, ultimately, I too was willing to take the risk. He kept saying nobody he'd been with ever had symptoms. Well, that's false security, you and I are living proof of that as are thousands and thousands of other unsuspecting women - as we know YOU DON'T HAVE TO HAVE SYMPTOMS to have this! Yup, deliberate, selective ignorance so as not to mess up his sexual conquests.
I had a blood test several months ago, knowing I could never start another relationship until I knew 100% for sure I was negative. I wasn't!
I'm currently seeing a man my husband had introduced me to - an acquaintance of his - back in 1994! Incredible! He lost his wife in a horrible car crash and we met 'on-line'. He lives 23 miles north of me. What are the 'chances' of something like that happening! He's a wonderful man, but still struggling over my news. I'm hopeful, but absolutely will not push. If he decides we can try to make this work I'll be thrilled. If not I totally understand. I'll be hurt, but I feel that these situations all happen for a reason. I'll either find someone really amazing who won't be too bothered by this or I'll stay single. It's out of my control now. Only God knows what plans He has for the rest of my life.
Enough of my story.
You are an amazing person! I hope things continue to stay strong with your husband. Is he supportive?
Exactly right - God doesn't give us more than we can handle. You're the exact right mom for Ethan. Please try not to beat yourself up any more over the woulda, coulda, shoulda's. It's tragic. Totally horrible. But, stay close to the people you love who also love and support you. Keep pouring your heart out to God. He cares. And listen. To the wise people He's bringing into your life and especially to Him. Be good to yourself, take lots of deep breaths, walks in nature. Appreciate the moments. Love and let yourself be loved. :-D You're in my prayers Ethan's Mommy!
I do have to say that my husband is my rock. He is why I am still here today. He has held me up and walked me along. He has not even went to take the test because he says that does not need to know. All he wants to believe is that his life (me & Ethan) have it and that means it is now his life.
I would like anyone that wants to check out my webpage to see Ethan.
all you have to do is hit the photo button when it comes up.
what a beautiful child. A blessing in disguise. I know things are so trying right now, but through you and Ethan, perhaps you can help teach the WORLD about herpes, and be an advocate to educate people/hospitals/doctos/etc. about testing ALL WOMEN WHO ARE ABOUT TO BEAR CHILDREN FOR HERPES! That loving beautiful joy is a gift, despite his handicaps and challenges. I know you love and adore him, cherish every single minute with this baby, because time with him is so precious.
I admire you so much for your bravery and courage. I hope others heed your advice as well as gather strength from you and your words. I share my tears with you, as well as my prayers for your darling son.
I also hope those out there who say "herpes is no big deal" read this. There is some schmucks on here who take such a lackadaisical attitude about herpes and it PISSES me off.....while nobody should be treated poorly or ostracized because they have herpes, they should also be careful...there is one person in particular who seems to have NO clue how dangerous this virus is. Like you pointed out so eloquently in your first post, ALL WOMEN SHOULD BE TESTED FOR THIS. Many people do not have any signs or symptoms of herpes. And while rare, it CAN be passe onto our children. So thank you for sharing your story and hopefully clueing in some delusional people who think this virus is "no big deal".
I am the mother of two, my youngest only 1 1/2 years old. I had a csection with him, mostly because I have horrible hip/pelvic problems and it make vaginal births nearly impossible for me, but also because I have herpes and it wasn't worth the risk to me. I knew I had herpes so I was able to make that choice. But again, not all women know they have this virus, that is what makes it so scary.
Again, I share my prayers, hopes, and tears with you. Shower that little angel with love, hugs and happiness. (I am sure you do!) I hope for the best for you and your family. Stay strong! you are an inspiration.
Your story is so touching...I viewed the pics of your little angel..
I agree with you that some people try to make this disease out to be "no big deal." It annoys me to read some of these people's posts that tell people to "get over it," etc. It is an insidious virus; I have suffered with it for over twenty years! Your story touched my heart very deeply; I feel so much empathy for you. You are a brave and wonderful person, and your son is lucky to have such a caring, loving person such as yourself for a mother.
There is so much about this disease that are potentially dangerous that people just don not know or simply do not want to accept! Your story is proof of that....My heart goes out to you... Many blessings...
Did you ever have any hsv symtoms?
I ask because ,my story is just like yours but, i went home with a healthy baby,8 pounds,
2 weeks later everything went down hill from there,with his health.if you want to here my story please let me know.thank you!
Thank you for sharing your story... I saw the pic too and your baby is adorable... I wish you the best for the future despite all the hardships...
More reason that Herpes screening should be standard during pregnancy. They screen for other STDs but not the herp because they are afraid of false positives. All they have to do is retest if they are worried about a false positive, and once they know you have H, at least the docs can be alert to H and either offer a C-section or be extra careful about a vaginal birth (or even offer meds to reduce viral shedding).
share your story if you can...
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