Congenital CMV: One Virus, Many Possible Outcomes

Ninety-one percent of women and expecting mothers do not know about Cytomegalovirus (CMV), yet it is the most common congenital viral infection in the United States. I was one who had never even heard the term “CMV” before meeting my sweet nephew, Emmit.

Cytomegalovirus (pronounced sy·toe·MEG·a·low·vy·rus), often shortened to CMV, is a member of the herpe virus family. Once CMV is in a person’s body, it stays there for life and can reactivate, but is harmless to the general population. It is not harmless, however, to expecting mothers and unborn babies. Mothers who contract the virus for the first time while they are pregnant can pass the virus to the unborn baby through the placenta.

Congenital CMV: One Virus, Many Possible Outcomes | Duluth Moms Blog

Emmit Andrew

Little Emmit (2lbs 2oz) arrived into the world at 28 weeks. He was in his hometown receiving care for about three weeks before being airlifted to a larger hospital with a well known Children’s wing and a fabulous Infectious Disease team. It was at this hospital that he was diagnosed with congenital CMV a week later, and a treatment plan was started.

He was in the NICU for 4 months receiving oxygen, nutrients and breast milk through a feeding tube. He had hearing checks, vision checks, brain calcification status checks, blood transfusions, spinal taps, and so much more. When we visited, we were given a code to call in, and the nurses would let us in the first set of doors. There we were required to place all of our belongings in a locker- even our wedding rings. When the handwashing timer beeped, we were let into the second set of doors to see Emmit.

The most memorable treatment he received was a six week radiation treatment meant to lower the viral count in his body. His body literally shed the virus, and anything that he came in contact with needed to be thrown away. Crib sheets and all. This highly toxic treatment was very effective, but eventually started to cause liver failure, so they stopped treatment.

Even though Emmit’s little body was left to fight the virus on its own, he was not alone. His mom and dad took turns providing Kangaroo Kare, often sleeping in the NICU overnight, and taking care of their toddler daughter. I was blown away by the angelic NICU nurses who greeted us daily during our visits. They were Emmit’s support staff, but they also were there for his parents during the toughest time of their lives to date. Bless those NICU nurses!

Congenital CMV: One Virus, Many Possible Outcomes | Duluth Moms Blog

My Own Positive Test

Knowing what I had learned through Emmit’s whole journey, when I found out I was pregnant, I requested a test for CMV at my first prenatal appointment. The test came back quickly, and sure enough, I had caught the virus at some point in my life. The positive test results did not surprise me as I was a daycare kid, had four younger siblings, my main source of income growing up was babysitting, and I was at that time working with an at-risk population of youth at a non-profit. What the test also showed was that the virus was active at that time inside of me. This was a surprise. What the test wasn’t able to tell us was when the virus was activated again, before I became pregnant, or after.

The situation was not urgent due to the fact that it was so early in the pregnancy, and that if the baby did contract the virus via the placenta, not much could be done before birth anyway. In an early anatomy scan, there was a cyst that was showing up in the baby’s brain, which could have been just the spinal fluid being caught due to the rapid rate of growth, or it could have been a marker for CMV and other conditions. My OBGYN did refer me to a maternal and fetal medicine team to check the situation out more thoroughly.

Genetics Counselor

The first person I was scheduled to meet with was a genetics counselor.  Because I was new to the process, I thought I was just going to get a more thorough ultrasound and be on my way, I was never told I’d be meeting with others. At first, I told my nurse that I really wasn’t comfortable meeting with a genetic counselor because I wasn’t interested in finding out any specific other conditions the baby may have had.  Any knowledge I gained about the baby’s genetic make up was not going to influence our decision to continue the pregnancy full term.

She assured me it was just a session for the counselor to find out what we knew about CMV, hear our experience with Emmit, and to be there to answer our questions.

Ultrasound

Next came the ultrasound. There were three techs in there with me, and then the doctor came in. She reviewed everything in real time, the first thing she noticed was that the cyst in the brain had resolved itself! Talking to me throughout the process, words I will never forget that she said to us: “I don’t want to see you again! Go have a healthy baby!” What a relief.

Congenital CMV: One Virus, Many Possible Outcomes | Duluth Moms Blog

Charlee’s Test

When our daughter Charlee was born, she was small (5 lbs 4 oz), but deemed healthy. The on call Nurse Practitioner that day was fabulous, ordering Charlee be tested for CMV immediately when I told her my concerns and history. The NP let me know she was not very familiar with the virus and needed to research the proper testing procedures for infants, and she would be back to visit. She did not want to do a slightly invasive blood test, so she ordered a urine test. Within a day we heard back that Charlee was negative for CMV. This was such a relief, we knew full well that the outcome could’ve been much different.

Mitty the Miracle

Given a ten percent chance to live, Emmit is a true miracle. He is the happiest kid ever, a true shining light. He was born smiling. He has so much strength, he is the definition of a true fighter. The devotion that his mom, and siblings and extended family have to his success and quality of life is indescribable. They often travel five hours one way to attend Emmit’s important doctors appointments for assessments and treatments.  

When you hear Botox most think it is a luxury treatment for women who want to give their facial features a bit of a lift. Who would’ve guessed that four year old boys would receive Botox in their legs to fight symptoms of Cerebral Palsy and gain muscle control? Medical technology just amazes me, and has me loving Botox that much more! He has limited verbal skills, but just rocks at sign language and loves going to preschool! His most recent trick is riding a trike unassisted; he is going to have a fun summer! Nothing is impossible for Emmit, the sky is the limit!

This Month

June is CMV awareness month. If I have made even one mamma aware of the virus, I have done my job. I encourage you to research the virus more on your own this month. You can start here. #stopCMV

     

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