Tuesday, July 1, 2014

Stop CMV

It's almost the end of June and I realized that I nearly missed CMV awareness month.  Pardon me while I step onto my soapbox. 

I have had the good fortune to connect with many CMV families and although many doctors will tell you that it's rare-- it isn't as rare as you might think.  In fact, I have been amazed by the number of friends or friends of friends who have both lost kids and/or are dealing with devastating  situations due to this scary virus.

Our CMV story so far has been a very blessed one-- but there are many, many families caught off-guard by a disease that is under-represented in pregnancy literature.  I think many women during pregnancy are prepared mentally for risks-- some of which are well documented and many that may not register fully.  CMV was a virus that I didn't read about, didn't initially suspect when we failed our newborn hearing screen, nor did our medical providers lead us down a path of identification or toward treatment of CMV.  

It was off the radar for many, including me as a new mom. 

It wasn't until Dr. Google and a little help from clinicaltrials.gov that I brought my suspicion to my OB, who thankfully listened to me.  If it weren't for his follow up, we would still be 'un-diagnosed' hearing loss. (And we would have missed the opportunity to proactively treat.)  

I have read that 1 in 150 kids in the US are born with congenital CMV. That is a pretty significant population for something that may be at best a blip in a pregnancy book and never brought up by your OB. 
Only 13% of women have heard of CMV. More children have disabilities due to congenital CMV (cytomegalovirus) than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.
Cytomegalovirus (CMV) is a common virus that infects people of all ages and is usually harmless to people with a healthy immune system. Women who have had CMV earlier in life are thought to be immune to the virus with low risk of passing on to their fetus.  However, if a woman develops a primary infection during pregnancy,  there can be a number of risks to the baby. 

How do you know if you 'caught CMV' during your pregnancy?   You may not. . . in fact many CMV infections produce no obvious symptoms.  I didn't remember ever getting really sick during my pregnancy with James-- sure there may have been one day where I went to bed at 8 instead of 9. . . . or felt a little extra achy. . . but many of the symptoms of CMV could also be symptoms of pregnancy itself.  You are hosting a parasite after all.

How can you help? Talk about it!  Get it on the radar! CMV is common enough that it should be on the minds of pregnant women as a real risk.  Personally, I think it's smart to find out if you have had the virus in the past prior to getting pregnant-- but if that's not an option . . . be smart (maybe not paranoid) about personal hygiene, especially around children.  Don't lick the spoon after feeding a baby. . . . wash your hands regularly. . . . don't share food with people who may be sick.    Being sick while pregnant blows anyway-- let's avoid it if possible shall we?

There are studies looking into treatment for women and unborn children who are infected in utero.   Knowledge is power and you may find yourself with some options if you know how to talk to your provider.

Not to be all gloom and doom, many children with CMV are asymptomatic and many are like James, who have mild/moderate hearing loss.  Those are the lucky ones though-- this can be a truly devastating situation for many children.  Other countries are starting to screen for CMV and be more proactive with the treatment for women and children.  Push it with your doctor, it might be worth it.   Once we were able to identify the situation for James, we were able to seek anti-viral treatment that has been shown to reduce risk of progressive hearing loss.   So far, we have been lucky and his hearing has been stable.  We won't know if it was because of any special treatment or not, but I feel good as a mom that I advocated for my child, did everything in our power to keep him as healthy as we could, and gave him his best shot against a nasty virus.

Stepping off my soap box now.

No comments:

Post a Comment