Lillian Grace’s Story {Cytomegalovirus :: The Silent Virus that Women Need to Know About}

While pregnant with my second child, I experienced a severe upper respiratory infection, fatigue, fever, and just couldn’t beat the illness. I just attributed it to being pregnant and raising a toddler. After several trips to the doctor and hospital, I was told that I had bronchitis. No one even suggested that I could have had a CMV infection.

Lillian Grace's CMV Story (1)Lillian Grace was born 12.28.2011 and was discharged from the hospital after 4 days, and we were told everything was just fine. However, by the time she was 6 months old, she was not reaching her milestones and had a condition called microcephaly {small head measurement}. This prompted an MRI of the brain, which showed she had a condition called Polymicrogyria {too many small folds} on her brain. This discovery led to a borage of genetic testing that showed no abnormalities. Around 10 months of age we also found out our daughter had a profound unilateral hearing loss in her left ear. This was so frustrating because our daughter passed all newborn screens yet she was showing various disabilities that we felt should have been discovered earlier. By piecing together information through online support networks, I learned that CMV is a known cause of Polymicrogyria and hearing loss.

Lillian Grace's CMV Story (3)At that point I asked my pediatrician to run a CMV blood test on our daughter, which determined that she had a previous CMV infection. Our pediatrician Dr. Shannon Hayes linked us up with Dr. Demmler-Harrison, the leading CMV expert and pediatric infectious disease doctor in the country. In order to prove the CMV infection was congenital, we needed to retrieve Lillian’s newborn bloodspot – which was not an easy feat. Finally, I tracked it down from the state of Texas and asked that it be sent to the Centers for Disease Control for further testing. It took all of Dr. Demmler’s resources and time, but after a painstaking process and wait, they confirmed that Lillian’s newborn blood spot did test positive for CMV infection. By this time she was almost a year old.

The hardest part about this journey was the delay in treatment and diagnosis for our daughter. Had we known about the CMV infection either in utero or at birth, she could have had access to early treatment and intervention. I often wonder if it could have prevented her hearing loss or could have helped her brain to develop normally if we were able to start the antiviral treatment in utero. A simple blood or urine test could have opened up a world of possibilities for our daughter.

Please, if you have any of these symptoms during pregnancy, ask your doctor for a simple CMV blood test. From mother to mother I am asking you to at least be aware of CMV symptoms during pregnancy, speak up, and ask for a test if necessary. The key symptoms can include :: mononucleosis like illness, fever, fatigue, muscle weakness, and sore throat.

Lillian Grace's CMV Story (2)

In honor of National Congenital Cytomegalovirus Awareness Month, we are dedicated to spreading awareness and doing our part to Stop CMV.  To read more real life stories of how CMV is affecting moms across Houston, please click here.  To read tips on preventing CMV for you and the ones you love, click here.  Then, we urge you to share this series and help us to spread the word about this preventable disease too!

Lillian Grace's CMV Story - Sandra's BioAbout Sandra S.

Sandra is wife to Neal and a stay at home mom to Vivian, age 4, and Lillian, age 2. She is an advocate for all things CMV and loves tex-mex food and margaritas.  She completed her undergraduate degree at Indiana University and received her MBA at Florida International University. You may read more about Lillian and her journey with congenital CMV at Pray for Lillian.


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