In addition to connecting with other Moms, I've been a google-nut (aren't we all?) and have found many websites about congenital CMV. Most of them are research-based. You know the ones. Big words, case studies, the works. And although I can hold my own these days when it comes to medical verbiage... (I know all about hyperimmune globulin treatments, symptomatic versus "silent" infections, and a possible CMV vaccine. I even know about HB00811 (Utah), which is the first legislative public health initiative in the U.S. mandating CMV education for women and CMV screenings for children who fail their newborn hearing tests) ... I want to learn more.
I want to educate women about a virus that is quite common, but one that most women have never heard of. I want everyone to know what I didn't, that although cCMV only occurs in about 1 in 150 births, it is still the most common reason for birth defects and developmental disabilities in children. It is more common that Down Syndrome, Spina Bifida, Fetal Alcohol Syndrome and pediatric HIV/AIDS.
So, when I found the website, www.stopcmv.org, I knew I was in the right place. And here's why...
Stop CMV was started by a regular Mama, just like me. She is the mother of twin daughters, both of whom were infected with CMV in utero. Through this organization, she's been able to share her story (and others'), connect families, raise funds for CMV research, and most importantly educate people (including doctors!) about a virus that needs to be talked about.
On her website, there is a section entitled "Share Your Story". Well, I've wanted to for some time now, but I just never felt like I had it in me. I wasn't ready, ya know. Until now...
I created this video that may or may not be shared on the website, but one that I hope is able to reach just one mom-to-be. Only one.
I hope she sees our video and talks to her doctor. To a doctor who will probably tell her to not be worried. Who will tell her that contracting CMV while pregnant and then passing it on to her baby is rare (it is NOT). Who will look at her skeptically because the doctor herself doesn't know much about the virus.
I want this Mama to feel empowered. Full of knowledge. Strong. I want her to request a blood test, which will reveal whether or not she has had CMV in her life and whether or not she needs to be extra careful during her pregnancy.
You see, CMV IS preventable. It is passed from person to person like any other flu or cold virus ~ through bodily fluids like saliva, urine and tears. If you have toddler at home while you're pregnant, like I did, the chances of you dealing with these "bodily fluids" on a daily basis are quite high. So, all you have to do is be vigilant ~ don't share eating utensils or straws, avoid kisses on the mouth, wash your hands, and so on.
If the blood test reveals CMV antibodies (meaning, she's already had the virus), that mommy-to-be will probably not have to worry about the virus harming her baby. If she does have a recurrent infection while pregnant, those antibodies will fight off the virus BEFORE it passes the placenta and reaches her unborn child.
Women need to know their CMV status before they become pregnant.
I guess this has become a passion for me, and not because it was some fluke or some random problem I encountered during my pregnancy that resulted in Jayce's hearing loss and Cerebral Palsy. No. It was totally preventable, but something I knew nothing about (and believe me, I knew all about being pregnant because like most Mamas, I read about it). This is just not ok.
I want ALL women to know about CMV and the affects it can have on their unborn child. When we know better, we do better. That's what Oprah says, after all. And when Mamas unite, amazing things can be done! A vaccine is in the works, people (click the link below!). It may happen. A vaccine that could literally eradicate the birth defects caused by this virus in general.