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Neonatal HSV and Meningoencephalitis

Hi. My name is Desarae and I am a 25 year old mother of 2 wonderful little boys. My oldest, Drake is three years old and his little brother is Dante, who is 15 mos old.

I first found out that I had herpes 7 months after I got married. I did not contract the virus from my spouse. It was a very devastating time in my life to find out that I had contracted an STD as I was not a promiscuous teen. When I got married I had only been with 3 other men.

Right before I was diagnosed my husband and I had decided to try and have a baby once he got home from being overseas. When I found out that I had herpes in Dec of 1999 I thought that I would not be able to have children because of this, but through some diligent research and consultations with health care professionals I found out that I could have children. There were just a few extra precautions that had to be taken during the pregnancy and at time of delivery.

I have been very open about having herpes since I found out about it. My first child was born without problems and is happy and healthy. Unfortunately my second child was not so lucky. At the end of my 6th month of pregnancy with Dante I suffered from the most severe outbreak that I had ever had and Dante contracted the herpes virus from me. The Doctor's cannot say for sure if that was when the virus was transmitted from me to the baby but I feel that was when it happened.

Luckily being as open about it as I was is what saved my baby's life. The delivery was normal and no sign of lesions and I had been on medication to help prevent any outbreaks as my due date closed in. When Dante was 24 days old I was awakened in the middle of the night by my older son crying and that is when I realized that there was something wrong with Dante. After we called 911 and had been taken to the Emergency Room, the first words out of my mouth to the ER staff was that I had Genital Herpes and they decided to start IV antibiotics for the virus just to cover all the bases since they did not know what was wrong with him and had to wait for test results to come back and cultures to grow. After two long stressful days in ICU the test results came back positive for the herpes virus.

The Doctor's were very reassuring to me, making sure that I knew it was not my fault that this had happened and that it was extremely rare for this to happen in the first place. Dante spent 21 days in the hospital getting IV antibiotics. He has not had an outbreak as of yet but the doctors say that he can and that it could occur
anywhere on his body.

He was officially diagnosed with Neonatal HSV Meningoencephalitis. This caused moderate brain damage to Dante. His basal ganglia is dead and the part of the brain that controls short term memory is also dead, there is a band of damaged brain tissue that goes from one side of the brain to the other that controls his motor skills. He is 15 mos old currently and has the development of a 5 month old infant. He does not sit up, crawl or hold his own bottle. He has just gotten full ability to support his head which will start the process of getting sitting and other muscles strengthened.

When Dante was nine months old, the doctor's felt confident enough to change Dante's diagnosis to level four mixed tone Cerebral Palsy. This kind of diagnosis is generally not made until a child is around 18 months or older but Dante was already exhibiting severe signs of Cerebral Palsy. He currently gets Occupational Therapy and Physical Therapy every week along with a home therapist visit once a week too.

For those parents out there with children like my Dante please don't give up hope and keep supporting your children. Anything is possible. I just wanted to share my story with you all in hopes of bringing hope into someone else's life. Please keep in mind that transmitting this virus to an unborn child is extremely rare 1 in 3000-5000 women with HSV will pass it on to the child.

Please know for any of you parents out there in a similar situation that there are others out there going through what you are going through or what you have gone through. My hope is to someday look online or anywhere for support for parents like me and find a support group that is dedicated to mothers that have passed this virus onto their child. - Desarae

 

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