We first became concerned about our little Kaley at about 21 weeks gestation when she was diagnosed with IUGR. Otherwise, everything appeared to be fine, so we continued to go for follow-up scans, and it was always the same result. She was very small but otherwise fine. They did a TORCH panel eventually which showed elevated CMV antibodies but the timing of infection was uncertain, especially since I never got sick. The doctors didn't appear overly concerned since she didn't have any other typical CMV ultrasound findings, but they continued to monitor her.
Then during one of the check-ups, there were some concerns on the biophysical profile, so I was sent for a non-stress test and there were concerns with that as well. They admitted me to the hospital for monitoring, and two days later there were concerns with a stress test result indicating she wasn't doing well in the womb, so they decided to do a C-section that afternoon. I was an emotional wreck, as I was only 34 weeks and 6 days, and this was far from what I had hoped for her birth.
She came out as tiny as they had predicted, only 3lb 1oz, and 15.5 inches long, but oh so beautiful. I had already met with Dr. Gail Demmler prior to the C-section because of my positive CMV antibodies, and was devastated when she came to my room two days after Kaley's birth to confirm the CMV diagnosis. I knew it was a possibility, but was hoping beyond hope that it wasn't the case. It was an emotional road those first 5 weeks in the NICU, but the staff and Dr. Demmler were great. Kaley received IV treatment while there, and then continued on Valcyte for 6 months after discharge.
Although she had some minor symptoms at birth, and is still very tiny (<1st percentile), she has been doing remarkably well. At almost 17 months old, she is on track developmentally and has no significant hearing loss so far. She is such a joy and makes me laugh every single day. I thank God constantly not only for blessing us with her, but for blessing us with her CMV outcome, and now even more so as I continue to read others stories with much more difficult outcomes.
What is most frustrating for me, is that I knew about congenital CMV due to my work in the medical field, but I had no idea how high my risk of infection was from my toddler. I washed my hands constantly, but also kissed and shared food with my toddler all the time. So although I was educated about the possible effects from CMV, I was not properly educated about prevention. I will continue to spread awareness and count my blessings, as they are many! A big hug to all those who have suffered and lost due to CMV.
- Shared by her mother, Andrea
Posted: 6/20/2016 7:10:40 PM