Malakais CMV story:

If you are pregnant, or you know someone who is pregnant, tell them to talk to their doctor about CMV. 

Awareness is key when it comes the health of your baby. 

 **and if you’d like to know a little about CMV but don’t want to read our entire story, feel free to scroll to the bottom. I’ve put some basic information about CMV down below, along with additional websites you can visit to learn more about CMV**

At 27 weeks pregnant Malakai was diagnosed with Mild ventriulomegaly, which is a condition that causes the ventricles in the brain to fill up with cerebrospinal fluid. (Typically, this causes an enlarged head.) We were monitored throughout the rest of my pregnancy, and everything was seemingly normal. 12/20/2019

 

When he was born he had an ultrasound done on his brain, showing his ventricles were a normal size and we were in the clear, but he had four cysts (possibly due to the birthing process). Just like all newborns, Malakai had to have a hearing test.  But he had to take multiple hearing tests because he failed his hearing test on the right ear, but passed on the left. (He’d fail on the left then pass, then fail again. So it was questionable.)  They chalked it up as possible fluid in the ears. 02/11/2020

 

Again, things seemed normal, he responded to sound and would look at whoever was talking, so our pediatrician said we could wait until COVID had calmed down before taking him to the hospital to test again. 02/25/2020

 

By the time Malakai was two months old things began to take a turn for the worse. He had dropped down below the 5% on height, weight, and head circumference. When a baby’s head circumference is measured below the 5% for the child’s age, it is considered microcephaly, a smaller than average head size, his was measuring .54%. A baby’s head grows based on their brain growth. So, we would have to have him taken in for an MRI in order to see why his brain wasn’t growing properly based on his age. 04/11/202

 

We set up the appointment for the MRI, and went ahead and scheduled the hearing evaluation with an audiologist. We also had to set up appointments to see an ENT along with an occupational therapist in order to see if he was having feeding troubles, which may have been the cause of his low weight gain. 

Unfortunately, the MRI left us with more questions than answers. The cysts were gone, but his ventricles were enlarged, and his head circumference had now dropped to .45%. 5/18/2020

 

Things kept looking worse for us. We had been to some many different specialists at this point, and everyone kept saying it was his brain, but no one had any clue as to why. We had all of these symptoms but nothing to connect them to. Nothing was adding up, and nothing made sense. Our pediatrician was baffled. 

 

I requested that his pediatrician do as many tests as possible. 

I specifically requested a CMV test be done, along with metabolic screening, and a few other tests. (I suspected CMV after the countless hours of research I did, along with someone telling me to look into CMV)  Although the pediatrician felt CMV was slim, She agreed, and we got the blood work drawn, then had to wait. 05/30/2020

 

At the audiologist we were told his left ear had moderate to severe hearing loss, and it was likely that the right ear would be the same if not worse. We’d be referred to a new audiologist and a new ENT in order to begin the process for hearing aids. 06/01/2020

 

Then we finally got the call, the call I had been expecting. The call the confirmed my son had Cytomegalovirus (CMV). 6/09/2020 

We are still in the process of seeing specialists and trying to find the best care for Malakai, so I'm not sure what his future holds, but despite this scary diagnosis, things are beginning to look up and fall into place. We started out in this journey having no answer and having no idea what his outcome was, but we now know exactly what we are facing and we’re able to take it head on and work towards bettering his future in any and every way we can. 

Had we caught it sooner, maybe things would be different. Maybe he wouldn’t have severe hearing loss, I don’t know. Unfortunately, I was unaware of CMV and completely unaware of the health affects it could have on my child. CMV is not talked about unlike many other widely known viruses. CMV is a virus that all pregnant women should know and be aware of, and honestly, should be part of routine pregnancy screening. BUT Only about 9% of women know about CMV? How crazy?! 

BASIC INFORMATION ON CMV

If you don’t know what CMV is, that’s understandable. I didn’t either. Cytomegalovirus (CMV)  is a herpes virus, though NOT and STD. A pregnant woman can contact CMV if she has young children in the home that are exposed to other children, it can be passed by touching a child’s pee (diapers), sexual intercourse, Saliva, along with other bodily fluids. If a mother contracts CMV, it can be passed to the fetus through the placenta. About 1-4/100 women will get CMV during their pregnancies. 

CMV Symptoms in an adult:

-sore throat

-runny Nose

-fever

-fatigue

-swollen glands 

Each year about 1 out of 200 babies will be born with CMV, and of those babies 1 out of 5 will Have birth defects or life long health issues. 

Only about 10% of babies will show symptoms of CMV at birth. But even if you have a child with CMV and they are asymptomatic, about 15% of of these babies will develop hearing loss. (This is why hearing and vision tests are SOOO important for babies who have CMV, symptoms or not) “Congenital Cytomegalovirus, or CMV, is the most common viral infection, and the leading non-genetic cause of hearing loss, that infants are born with in the United States.“ 

CMV symptoms in babies include: 

-rash

-jaundice 

-microcephaly 

-low birth weight

-enlarged lever/spleen

-hearing loss (Hearing loss may be present at birth or developed later in life)

-vision loss

-seizures 

CMV is not a test that is ran on women during pregnancy unless there’s a reason to test for it, so some women do not know that they have the virus. (I didn’t know I contracted this virus during my pregnancy)

But there are ways to protect yourself from contracting CMV, and ultimately protecting your baby.  

-avoid sharing food with your babies 

-avoid kidding toddlers (I know this can be hard!) 

-wash your hands after EVERY diaper change

-practice safe sex 

-wash anything that may have come in contact with bodily fluid (saliva, pee, etc.)

Once CMV is presented in the body, it is there for life. There is currently no cure or vaccines for CMV, but there is medications available to help symptoms if CMV is affecting your baby. 

CMV is NOT a death sentence, and if it is caught in time, symptoms caused by CMV can be prevented. 

WEBSITES FOR ADDITIONAL INFORMATION ON CMV

https://www.marchofdimes.org/complications/cytomegalovirus-and-pregnancy.aspx

https://www.cdc.gov/cmv/fact-sheets/parents-pregnant-women.html

https://www.nationalcmv.org/

https://www.nationalcmv.org/overview/cmv-pregnancy

*** Adding this for anyone who is pregnant and plans to get tested for CMV***

If you get tested, make sure that your cytomegalovirus antibodies on both the IGG AND IGM are negative. For our case, I was IGG positive, but IGM negative. (I did get tested during my pregnancy for CMV and they missed it because of my test results) They told us in the cases they’ve seen, that’s not common.

I AM ADDING MY TEST RESULTS TO SHOW WHAT IM TALKING ABOUT SPECIFICALLY.