About Cytomegalovirus (CMV): One of the known causes of PMG
Links for your states routine newborn screening tests
According to the National Institutes of Health (NIH): “In most people with polymicrogyria, the cause of the condition is unknown. However, researchers have identified several environmental and genetic factors that can be responsible for the disorder. Environmental causes of polymicrogyria include certain infections during pregnancy and a lack of oxygen to the fetus (intrauterine ischemia).” See http://ghr.nlm.nih.gov/condition/polymicrogyria
One of the known causes of polymicrogyria (PMG) and other congenital diseases and syndromes is cytomegalovirus, also known as CMV. CMV is a herpes type of virus that affects approximately 50-80 out of every 100 Americans by the time they are 40 years of age. In other words 50-80% of Americans have been infected by CMV by the age of 40. That number is staggering! But even MORE alarming to me is the number of children who are affected by CMV during fetal development who will face a lifetime of challenges.
As a nurse, I find it extremely disturbing that there are NO standard warnings for pregnant women who may come down with “severe colds” or “mononucleosis-like illness” (aka “the kissing disease”) during pregnancy, to be tested for the CMV virus. There are NO mandates from the Centers for Disease Control and Prevention (CDC), the NIH, or the American College of Obstetricians and Gynecologists (ACOG) to test for CMV or to warn pregnant women of the potential risks of CMV to their unborn children. In fact, here is a link to a CDC publication regarding a survey that was conducted with physician’s associated with ACOG:
and the results are infuriating! According to the aforementioned article, “Among the 86% of OB/GYNs who reported ever testing for CMV during pregnancy, most provided CMV testing only if their patients requested a test or because a fetal anomaly was identified, consistent with ACOG recommendations (4) and CDC recommendations that CMV testing during pregnancy be performed under certain circumstances, which include the development of a mononucleosis-like illness during pregnancy.”
Please note that the following is directly from the CDC’s website on CMV and Congenital CMV Infection:
There is no available vaccine for preventing congenital (present at birth) CMV disease. However, a few CMV vaccines are being tested in humans, including live attenuated (weakened) virus vaccines and vaccines that contain only pieces of the virus. The Institute of Medicine has ranked the development of a CMV vaccine as a highest priority because of the lives it would save and the disabilities it would prevent. It may be a number of years before there is a Food and Drug Administration-approved CMV vaccine.” See more at:
Now, compare that with the following article that was taken from the New England Journal of Medicine (a top rated peer-reviewed medical journal -meaning it’s the TOP of the line for medical journals):
The above referenced article is a published research study in which 31 women who were pregnant and tested positive for CMV, either in the amniotic fluid or through CMV DNA testing, were administered IV hyperimmune globulin (think of that as a fancy medical term for a super immune boost to fight the CMV virus). Of the 31 who received the IV hyperimmune globulin only ONE (that’s right, 1) actually acquired congenital CMV infection. Of the women who tested positive and did NOT have the IV hyperimmune globulin, 7 out of 14 (a full 50%) of their babies were born with congenital CMV infection.
So, if there is a significant opportunity to prevent or mitigate the effects of CMV on unborn children, why then do we not provide this education to pregnant women and the treatment for CMV via hyperimmune globulin? I mean, we have a tool, apparently a very effective tool, to combat this awful virus and it’s potentially devastating effects. So why not provide this for those who are identified as being at risk?
First of all, let me digress and say here that the risk to the unborn baby is greatest (by a big margin) in cases known as “primary CMV infections”. This means that it is the FIRST time the mother (in this case) has had exposure to the virus. It is at this time that the virus is most damaging because her body has had no opportunity to make antibodies (the body’s natural immune system) against the virus. And because the baby’s immunity comes from the mother, the infection is much more significant to the pregnant woman and her unborn child.
Now, back to the question at hand.
If there is a way to stop or lessen the risks to the baby, why aren’t we doing it??? Basically, we have to prove that there is a need AND that there is a viable treatment option. Currently, there is a clinical trial going on by the NIH that is testing the effectiveness of hyperimmune globulin IV treatment for CMV positive pregnant women. It is slated to end in 2018. In the meantime, millions of babies will be born with congenital CMV with a large percentage of them left with permanent disability or worse, critical illness and death. We simply cannot afford to let this go on without taking some immediate measures to raise awareness and to advocate on behalf of these children and families!
So, in a nutshell, when do we say, “EVERY child counts!” It’s time to make a change ladies and gentlemen. It’s time that we all “Work TOGETHER to solve the mysteries of PMG”!
If you have read this, we challenge you to make a difference today. Share this with everyone you know. Put a link to it on your FaceBook, Twitter, Google+, your blogs, your websites; anywhere you can! We need you all…our children and our generations to come need for US to make a difference!
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Stand with us!
Catrina, President (and more importantly, Brie’s Gram)