On March 9th, 2018 my world was flipped upside down. I went to my OB for my 20 week gender ultra sound to quickly find out we were having a baby girl. While we were waiting to see the doctor, I texted family and friends to share the exciting news and tell everyone they were right, because I thought for sure I was having another boy! Clint came to the appointment with me, but had to leave for a work meeting before we saw the doctor. After seeing the doctor, she told me she saw something abnormal on the ultrasound, specifically fluid in Lilah’s abdomen, and that she was referring me to a maternal fetal medicine specialist to get it checked out ASAP. I don't know that I listened to anything she said after that, I left the office in complete shock and sat in my car thinking this can’t be happening as my phone dinged with congratulations texts.
The next 4 months of my pregnancy were filled with anxiety and visits to the maternal fetal medicine specialist for weekly ultrasounds. After a few weeks of seeing the specialist we found out Lilah tested positive for CMV, to which my response was, “What the heck is CMV!?”
CMV is the most common viral infection that infants are born with in the United States, occurring in 1 in 200 births.
Because CMV is a silent disease – meaning most people who are infected have no signs or symptoms – the mother is likely unaware she has an infection during pregnancy. Babies born with congenital CMV may have birth defects and/or experience a vast range of developmental disabilities. And 91% of women DON’T know about it.
Lilah was born a month early via emergency c-section because her heart was in distress due to CMV. She spent a month in the NICU with countless affects from the CMV- blueberry muffin rash, jaundice, anemia, enlarged liver & spleen, too many blood transfusions to count, the list goes on. CMV has stolen Lilah’s hearing, she is profoundly deaf in both ears & has brain damage including calcifications, microcephaly and polymicroygria. She is already experiencing developmental delays of 2-3 months and receives physical and occupational therapy once a week in addition to a teacher who comes to our house every week to teach us sign language. Lilah is on track for cochlear implant surgery sometime this summer, in hopes that she will one day have access to speech, language & the hearing world.
Please support our team and the National CMV Foundation, any amount will help! THANK YOU!