The Diagnosis

The next few days were a blur. Within 24 hours, we knew something was wrong. The NICU doctors were calm but mentioned they were running a series of tests on Evelyn to determine the cause for her prematurity,  low birth weight and small head. On Friday, 3/15, Dr. Zaia confirmed that Evelyn had congenital cytomegalovirus - or CMV. CMV is a very common virus, for instance for every 100 adults, 50-80 are infected with CMV before they reach 40 years old and the age of 60, 80% of people are infected. CMV is typically harmless, however when diagnosed in babies who are infected before birth, which happened in Evelyn's case (and in 1% of all babies), CMV can cause serious disease such as hearing loss and/or developmental disabilities.

We were/are completely devastated. CMV is transmitted through the placenta during pregnancy, and unfortunately OBGYNs do not screen for this infection regularly. My doctor, Dr. Stokes, said that I did everything textbook. There was nothing I could or should have done differently throughout the pregnancy. This is simply bad luck. HUH?! This explanation or really this lack of scientific explanation is horrifying and frankly, unacceptable. We feel utterly helpless, we'd do absolutely anything to change this diagnosis. 

The next 3 years are critical for Evelyn's development. We do not know the extent of the disease or how she'll be affected by it. There is no proven treatment, only educated guesses. One thing is for sure, we will give her the best care possible and she will be loved for she is perfect in our eyes. This will not define her, and it will not define our family.

When Evelyn is released from the NICU, which should be in 1-2 weeks, we will have a slew of specialists to meet with to help her long-term prognosis. These specialists include a pediatrician, neurologist, an infectious disease doctor, physical/occupational therapist, and ENT. The state of Ohio offers an early intervention program called 'Help Me Grow'. This program will help facilitate all of Evelyn's appointments, and offer guidance as to her care.

Please keep sending your positive energy to Evelyn.  She has already surprised many of the doctors here and we hope continues too in the days and weeks to come.