This is my son, Trevor and his wife, Lydia’s story. They recently lost their second child, Beau, due to stillbirth at 20 weeks. Although it was a very difficult decision for them to share this, they knew their story may help others. They had never heard of this infection. I had not, either. You may not have, either. Their purpose is not to scare other pregnant women, or those wanting to become pregnant, but to educate all on this common childhood infection, and through education, help others. My heart breaks again, but I am so proud of both of them for sharing their story to raise awareness.
****I have struggled with if and how to share our story on what happened with Beau. Our stillbirth was the result of cytomegalovirus infection (CMV). We will not be able to try again until the doctor tells us we can. If you are pregnant or will ever be trying please read all of this!1 out of 150 births have congenitalCMV causing more health problems and deaths than downs syndrome, fetal alcohol syndrome,neuro tube defects, and pediatric HIV/AIDs. Yet less than 15% of pregnant woman know aboutCMV and its risks (I had never heard of it before).
CMV is very common viral infection virus that once you are infected stays with you for life. It is estimated that 50%-80% of us in the US have it by the time we are 40. 40% of women that get theCMV infection for the first time during pregnancy will pass it on to their unborn baby.CMV is the most common congenital (meaning from birth) viral infection in the United States. It is known as the “silent virus” because most people will present with no signs or symptoms or harmful effects after birth. Those that do have symptoms are similar to mono. (For example, I remember being fatigued and having night sweats, but thinking that’s just pregnancy and hormones.) Permanent health problems and disabilities due to CongenitalCMV are: hearing loss, (#1 cause for non-genetic hearing loss), vision loss, mental disability, failure to thrive, sleeping issues, behavior issues, microcephaly, intracranialcalcifications, and lack of coordination, cerebral palsy, seizures and death. It is the leading cause of mental retardation and disability. Yet no one talks about it? Why it that…well it may have something to do with how I got it.So how did I get it? “CMV is spread from one person to another, usually by close and prolonged contact with bodily fluids, including urine, saliva, and tears. CMV is very common among healthy children 1 to 3 years of age who are at high risk for contracting CMV from their peers. Contact with the saliva or urine of young children is a major cause of CMV infection among pregnant women, especially mothers, daycare workers, preschool teachers, therapists, and nurses. “ (www.stopcmv.org
) So most likely, I got it from kissing or sharing food/drinks with my son. I cannot express how disappointing, frustrating and heartbreaking this is to find out. To think that I lost one son by being a mom to my other son, how is that even possible? And honestly, who wants to talk about that, I know I didn’t. But if I didn’t share I realized I am part of the problem of the silence.So what will I do and what can you do with this information. Well currently, Utah is the first and only state to require OB/GYN’s to tell pregnant women aboutCMV and how to prevent it (started in Oct 2013). There is no national awareness campaign to educate mothers, and from what I can find nothing in Missouri. So first there is awareness, tell other pregnant women or women trying to get pregnant, please! Especially if they have or work with young children. I don’t want to scare anyone, but just simply say, “I know this is weird but I heard of this thing that no one talks about called CMV…have you heard of it?” I have read that there it treatment if detected early, and even a chance to reverse it (before birth) if detected early. Also, a vaccine is in the works…but they are thinking it is 10-20 years down to road.It was very hard to go what we went through just 7 weeks ago…and I still struggle with it every day. But to find out it was preventable and I knew nothing. It gives me mixed emotions. Because what could someone do or say to convince me back then that this is serious. In reality would I take precautions and get creative with affection (maybe not sloppy kisses but butterfly kisses for a few special months)?. I know our kids are freaking cute and it is very hard to do practical things like refrain from kissing or sharing. But I can share this, sometimes now when I hear Ben’s laugh or see how cute he is, sometimes I want to (or do) cry because I realize that Beau was would also have a cute laugh or smile, but I will never hear his laugh or see his smile and neither will his big brother and it didn’t have to be that way. So I can tell you this, if you are a parent to two children or are a sibling, think of not having that second child or sibling simply because mommy kissed the other. That’s what I live with every day now…I don’t want anyone else going through that. And that is why I share our story. June is National CMV Awareness Month. So please share this.