ENCEPHALITIS CASES - Ethan and Anthony

Encephalitis Cases

Ethan & Anthony

This is my story about my boys, Ethan and Anthony. They were diagnosed at 13 days old in 2004. After a long hard road trying to conceive, I finally got pregnant! I had a very difficult pregnancy and had to spend the final two months on bed rest in the hospital. I delivered two beautiful boys on October 5, 2004, and I was absolutely thrilled to bring them home with me. My worst fear had been leaving them behind in the NICU.

They had some small issues. They were jaundiced, weren't great feeders, and the pediatricians were concerned about their weight loss. Of course, it's normal for newborns to lose weight, but they were so small that they couldn't afford to lose much! We kept them away from crowds, washed our hands fanatically, bundled them tight and woke them up to feed every 3 hours!

When they were about a week old, I noticed that the pin pricks on Ethan's scalp (from internal monitors during labor) were infected. I kept them clean and dry and covered in a cap and figured I would mention it to the pediatrician at our upcoming appointment. Then one Friday, at 10 days old, I saw that he had a little cluster of 3 blisters on his ear. My husband took him to the pediatrician and I thought he must have misunderstood when he said the doctor said it could be herpes! But the doctor also said it could have been staph or impetigo and gave us an antibiotic ointment and a follow up appointment for the following Monday.

We took Ethan back on Friday and nothing had improved. It was actually much worse. He was very sad-looking when he told us he thought it was herpes. I thought it was because it was uncomfortable to tell a mom that she gave her baby an awful disease. He contacted the infectious disease pediatrician and tried to get us a clinic appointment, but the ID doctor told him to send us straight to the hospital. When we got there, the ID doctor on service said it was definitely herpes and started all the necessary tests and IV's. It was very intimidating to have all those residents listening and looking at my baby boy. I know they need to learn, and they were very respectful of our situation, but that was so hard. The ID doctor said he could have encephalitis, but she didn't think so. It wasn't until a few days before coming home that I realized how serious encephalitis could be. The tech came to take his vitals and said his temp was low so we bundled him. Then she tried for several minutes to count his respirations, but he kept stopping. I wondered if it was normal for babies to stop breathing like that.

Of course, it wasn't. They moved him down the hall to a monitored bed. While there, his stats continued to decline. So within hours they moved him to the PICU. The PICU doctor suspected he was having seizures and so he was put on Phenobarbital. The following morning they did an EEG and saw abnormal brain activity. It was then that they suspected encephalitis and asked more about my younger twin, Anthony. With no literature to learn from, they were unsure what to do about Anthony. My family that was caring for him said he was fussy and not eating well, but I didn't know if it was the hectic nature of his care at the moment and not being near me to breastfeed or if it was herpes. The doctor admitted him and said we could decide whether or not to bring him in...we did.

Ethan's MRI and follow up EEG was normal and Anthony's tests were always normal. Ethan's CFS PCR came back negative, but a few days before discharge, the doctors found out that a second specimen had come back positive. It had indeed been encephalitis. After 3 weeks of acyclovir Ethan was ready to come home again! Anthony was ready earlier, but thankfully they allowed him to stay until Ethan was released so we wouldn't be separated.

After about a month, they were released from the care of the ID doctors! That was a good feeling! Ethan stayed on suppressive therapy for a few weeks, but his nutrifil count got very low and it was stopped. I worried a lot about a recurrence of the encephalitis, but he did great. So far, their development is great! Because of their prematurity, they are expected at 6 months to be developed like a 4.5 month old. Anthony is doing all the things a 4.5 month old should do. Ethan is doing even better! He does all the things a 6 month old should do (meaning he is "caught up") and his specialist says he does it with the confidence of an even older baby! Wow! We still have to watch for issues that may linger, but so far so good! Not a day goes by that we don't thank God for the hospital and doctors who cared for our sons. We were so blessed to have our boys treated at the hospital where Dr. Lawrence Stanberry is Chairman of Pediatrics. He is one of the top in the field of neonatal HSV. The other infectious disease doctors who cared for my boys were equally excellent and not only treated our boys but really helped us understand what this meant for us as a family and a couple.

I find it incredibly frustrating that it is so difficult to find others who can relate. I think this collection of stories is wonderful and I hope that it benefits others who come across it. I am so eager to find a way to get support to families who have or are currently dealing with neonatal HSV. I would enjoy any emails from others.

Parents
Texas, U.S.A.

Posted: May 12, 2005

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