baby son has severe brain damage from herpes virus

[raycar]

i mainly wanted to know if any one has ever heard of this happening and opinions about prenatal exams. my wife and i on may 3rd 2005 welcomed our first baby at 8:32am, all went well and we had a very health baby boy, we went home and were doing fine until day 11, at 2am my wife had noticed the baby was having spasm in his left side. we went to the doctor the next morning, the doctors immediately suspected herpes. i though herpes!! how in the world. they assured us that this was a very common condition, and many people have it, well a long story short my wife does have herpes, and the virus was transferred to my son when he was born, and now the doctors are saying that he will be severly retarded, will not ever talk, will never walk, he will not develop normally, the virus apparently attaked his brain and caused severe damage, the one thing that would have prevented all of this is if they had tested for the virus during prenatal care, and then done a cesarian section. does any one know if this is a common test while pregnant?

i believe that since this does so much damage in so little time this test should be mandatory. they tested for Hiv, and that takes years to take it's toll, after the first month and he was barely alive. i welcome all opinoions and thoughts on the matter,

he was admitted to the a convalesent home for children, he seems to be doing alot better than anyone had diagnosed. they are still using a feeding tube in his belly. they tryed to use the bottle, but he was aspirating so for his safety they inserted the g-tube. before he was unable to swallow. he was also given a hearing test which was normal, still waiting for the vision exam this month. he is 8 months old now, and is slightly behind, he sees and reconizes me and my voice. the other problem is his mother is currently not interacting with him and has told me basically she has mourned the loss of her son. i am at a loss of what to do about her, i realize my son needs me and his mom, but i cannot force her to accept him. she cry's immediately when she sees him and says it is too painful to see him. but since she hasn't been to the hospital in a few months she doesn't see the improvements. and comments or other info would be very welcome.

[hsvmom]

I e-mailed this to you in reply to an email i received, but incase you find your way here first...

Hello and congratulations on your family's most recent addition.

I have two boys (15 months old now) who were infected with herpes

during birth, one of which also had the infection in his brain

(encephalitis) like your son. I'm so very sorry that your family

has had to struggle through this.

As for prenatal testing, no it is not routinely done for many

reasons. In most cases, prenatal testing wouldn't be as usefull as

it seems at first. A positive blood test for hsv won't tell a

doctor *where* a mother's infection is, so unless she's symptomatic,

it wouldn't tell the doctor if her baby is at risk during delivery.

Also, over 80% of babies who are infected by neonatal herpes are

born to mothers who acquired the virus late in pregnancy In those

cases, the mother doesn't seroconvert (meaning her blood won't test

positive for the antibodies) prior to delivery, so even tests late

in pregnancy would not help in determining a child's risk of

infection.

What prenatal testing WOULD do is allow a doctor to offer some

education to patients on how to avoid contracting hsv during the end

of her pregnancy. From what research I've done, it looks like the

monetary cost of doing all this would be extensive compared to the

number of herpes infections prevented. As a parent of babies with

hsv, ANY cost is worth it if it saves just ONE family from this

nightmare!!! But from as unbiased a perspective as I can offer, it

makes sense to me that it's not included.

I'm really sad to read about the struggles your wife is facing. I

hope that she is receiving some therapy or at least that she her

doctor has considered post partum depression. In the best of

circumstances, the guilt that comes with having passed this virus

onto your child can be undescribably, but if she's having to deal

with a larger issue, like PPD, on top of that it must be very very

hard for her to come to terms with.

While I can certainly understand grieving the health of her baby

boy, your son sounds very much alive and he is a SURVIVOR! Neonatal

herpes is a devestatingly deadly disease and he not only survived,

but it sounds like he is proving some of his doctors' predictions to

be wrong.

How is your son? What kind of care does he receive in the

convalescent home? I am surprised to hear that he isn't home with

you as I have never heard of an infant encephalitis survivor being

admitted to a home. Of course, I don't mean that to say it's a poor

decision by any means!!! I just have not heard of that. Does he

receive physical therapy or occupational therapy? Did they put him

on suppressive doses of acyclovir?

I hope you don't mind the questions. I'm sure you have found, as

the rest of us have (it's a very slow group, by the way. only

sporadic posts) that there are not many other people who can relate

to the experiences we have all shared.

Best wishes to you and your family as you ALL recover.

[ouch]

I too, would like to add my congratulations on having this little baby boy added into your family. And while my prayers are with you that you all have had to suffer so much pain, please do not give up on him!!! It sounds to me like he IS a survivor as HSVMOM said. Give him all your love and all your strength. I Do not know much about neonatal HSV or encephalitis, but it sounds promising that he is already doing MORE than the doctors thought.

I agree too that your wife may be going through severe post partum, along with a sense of guilt for passing this. That is natural; but she needs help too. I hope she is getting some counseling of some kind.

Good luck to you! I send my prayers to you. I hope for a miracle for your little boy.