Sunday, February 17, 2008

Pregnant and you think you have contracted CMV?

If you are pregnant and find out you are infected with CMV, chances are your child will not be infected. But, here is one mother's understanding, Abby at terryjamesmom@VERIZON.NET, of what an infected pregant woman can do (in response to a woman who wrote to her):

First of all: Don't panic. Only 40-50% of women who test postive for a CMV during pregnancy actually pass it onto the baby. Then only 10% of those babies infected are born symptomatic (with another 10-15% who later develope more minor symptoms such as hearing loss and learning disabilities). So the odds are clearly on your baby's side. More good news: There are two types of treatment options available to you that were not available just a couple years ago. So when you read the posts on here please remember that most of our kids never had the chances your baby has. (Also I think we tend towards the more disabled outcome only because families with kids who have few CMV issues don't really need us long term, so don't judge prognosis based on us). 1. The most promising treatment right now is hyperimmune globulin. The product is called Cytogam in the U.S. and Cytoect in Europe. The U.S. expert is Dr Stuart Adler at Virginia Commonwealth University. His e-mail is and his telephone is (804)-828-1807. This is his life's work so he would be happy to talk to you or your doctors. In Europe the expert to contact is Dr Giovanni Nigro. (I'm sorry I don't have his contact info, but I'm sure if you do an internet search it will come up). In 2005 these doctors ran a breakthrough study in which they offered hyperimmune globulin to pregnant women who tested positive for having a new CMV infection. In the study the drug cut the transmission of CMV to just 3%. In contrast 50% of the infected mothers who opted not to receive the treatment passed on the CMV to their unborn. The treatment is considered safe and no adverse effects have been noted. 2. If you find out that your baby already has CMV you can still get the above treatment (it has also been shown to reduce the damage done). You may also want to consider antiviral treatment while pregnant (this is usually now the treatment for babies born symptomatic), but it has been used with pregnant women whose babies show damage on ultrasounds and then show remarkable improvement after the mom has been given the antiviral treatment. This option is not without risks to your health so you'll want to discuss it carefully if the need arises to consider it. 3. I also wanted to let you know that there is another good support group on Yahoo at cmvcpparentlink and we currently have a mom from Portugal who is 24 weeks pregnant and just diagnoses with a primary CMV infection. So if you are looking for someone to talk to who may be able to share where you are at, she might be a good contact. Hope this helps. Please keep us updated on your progress and we will keep you in our prayers. Hugs, Abby, Mom to Terry, born 7/11/92 - cCMV, profound bilateral hearing loss, complex vision loss (optic disc colobomas, optic nerve hypoplasia), severe mental retardation, autism, ADD, OCD, neuromuscular problems, primary immune deficiency disease (no IgA, low IgG), H/O severe failure to thrive (resolved), bilateral hernias (repared), congenital heart defects (pulmonary stenosis and ASD, both resolved) H/O myloclonic seizures (inactive since age 2) and great big brother to:James, born 4/9/01 - Down syndrome, tetrology of Fallot (multiple heart defects, has had two open heart and several cardiac cath surguries, needs more of both), failure to thrive, Celiac disease, GIRD, tracheal stenosis (narrow airway swells shut when irritated)and best smile this side of the universe!

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