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Caiti’s Story
"On August 25th, 2001, we were forever changed by CMV..."
I had been seeing a perinatalogist due to thyroid disease while pregnant. He gave me bi-weekly ultrasounds my entire pregnancy and a whole battery of prenatal tests that pregnant woman receive. He did not, however, test me for cytomegalovirus, nor did he detect anything wrong until the day before he decided to take my baby through c-section. They did an amniocentesis the day before and it revealed that I was extremely low on amniotic fluid but the baby's lungs were fully developed. The nurse told me they wanted to schedule a c-section the next day. I thought it was due to the amniotic fluid issue but found out during pre-op that the doctor was "bringing in a team of specialists because they (had) concerns about the size of the baby's head". That was the first we had heard of any concerns.
They took Caitlyn Rylee that evening and we did not see her for hours after her birth. The doctors did report that they thought it was Toxoplasmosis though...you know, the virus you can get from cats while you're pregnant. Everyone's heard of that. They later reported that it was Cytomegalovirus. After poking and prodding our tiny 5 pound infant, they discovered calcifications on her brain and was diagnosed with microcephaly. The infectious disease doctors filled our minds with frightening statistics and did not candy-coat a detail. Meanwhile, Daddy was home at night searching the internet for ANY information he could find on cytomegalovirus. There wasn't much out there at the time and what he did find was scary and sometimes tragic. Not knowing what the future would hold for our little angel, we decided that as long as we have Caitlyn, she would be the most loved and happiest little girl in the world. We were able to take Caitlyn home with us five days later. Thankfully, she was doing fairly well and did not appear to have any liver, spleen or heart issues.
I began talking to anyone with ears about CMV but no one had ever heard of it, not even the neonatal nurse of 22 years that lived across the street. My other little girl's teacher called to check on me and I told her of the virus that caused Caitlyn's complications. She asked if it was CMV. I responded in shock that she had even heard of it. As it turned out, her husband is a microbiologist and his life long study has been the connection of CMV and S.I.D.S. They asked us out to dinner and gave us quite the CMV education. It appears that I was most likely a first trimester exposure and he confirmed the fact that Caitlyn is, in fact, a miracle!
During the first 6 months of Caitlyn's life we saw many doctors but it was a therapist that suggested that we contact United Cerebral Palsy. I asked her why and she said because they have an awesome book that may address some of our feelings. Eventually, I called them, got the book and realized that my baby did have cerebral palsy. What a day! I began to grieve for the next several years for the child I thought we were going to have. Caitlyn was not officially diagnosed with CP until about 10 months of age. The doctors knew she had CP but "didn't like to diagnose before the age of 1 year old". Soon we would meet another mother and baby girl, just a little older than Caitlyn, at an Early Intervention play group. This baby also had congenital CMV and was about to get cochlear implants. Ironically, they saw the same perinatalogist because they detected CMV during this mother's pregnancy. After comparing notes, we realized were in the doctor's office many times on the same day. Ironic!
Caitlyn has never had vision or hearing issues but she did start having seizures that went undiagnosed for 2 years. Now at the age of 8, her seizures have progressed but appear to be under control, at this time, with medication. She is non-verbal and non-mobile but she continually surprises us. She communicates with some signs and eye gaze. Cognitively she is about at age level but apparently has a Moderate Mental Retardation Label. That's ok! We all know how smart she is! By the way, Caitlyn just made Honor Roll the last semester of third grade! She goes to her neighborhood school and is integrating 50% of the time. She loves school and is extremely popular.
Caitlyn had feeding tube and fundoplycasia surgeries (due to acid reflux and aspiration threat) when she was three. Before that she was unable to keep her meds down, among other things. At age four, her hip dislocated and she had to have hip surgery on one side. Now her legs are different length and she lost her ability to bear weight. She was walking with assistance before that.
It was until I saw a van in the parking lot of Old Navy with a big decal that read "www.stopcmv.com" that I realized there could be others out there that were also affected by CMV in Arizona, nonetheless. We stalked the van and met our awesome friend and CMV Sister, Heather. Now my Caiti and her Katie are best friends. I ran home that day 2 years ago, went to the website and cried because I knew we were not alone and there are others as passionate about CMV awareness as I am.
We have been forever changed by Cytomegalovirus yet blessed in so many ways because we get to raise the happiest, most loved little girl in the whole wide world! Caitlyn truly makes this world a better place but I will not stop fighting to end CMV and raise awareness as long as I have breath.
- Shared by her mother, Michelle