It was no surprise that we learned we were expecting on Thanksgiving Day. It was our son, Tyler’s 2nd birthday and a day to reflect on all the things we were thankful for, and that we were. Thankful to be expecting again. This was our third pregnancy. We lost our first baby at 12 weeks and shortly after we had our son Tyler who I carried full term and was a healthy baby boy. So needless to say the first twelve weeks of our third pregnancy, anxiety was high. We made it past the 12 week mark and felt we could breathe again, the ultrasound showed there was a healthy strong heart beat. We were relieved and grateful. It wasn’t until we had our 19 week ultrasound to confirm the sex of the baby that our pregnancy began to take a turn. I remember the ultrasound tech telling us they were going to have the doctor come in to tell us about the findings. Findings? What findings? My heart sank. The doctor came in and told us they saw echogenic bowel on our baby girl’s ultrasound. This led to a referral to a maternal fetal specialist.
The specialist began running a series of tests on me, one called a TORCH Titers test which tests for a variety of things. I remember the call I got on my lunch break at work. “You tested positive for CMV” also known as Cytomegalovirus. The Doctor did not appear overly concerned, but me being the worrier I am went straight to Google when I hung up the phone (I know bad idea). What was CMV? I’ve never heard of this, surely if this was important to know about I would have heard about it? Wrong! It’s a virus, known as the stealth virus. It appears as common cold symptoms and estimates show by the time you are 40 years old, 80% of the population has it, but doesn’t know it, mainly because it only presents as a common cold. I had an awful cold during the month of December, could this have been when I contracted CMV? My Google search led to findings that stated babies born with CMV could lead to liver problems, lung problems, seizures, hearing loss, mental disability, cerebral palsy, vision loss, and DEATH. I was terrified. The specialist told us we could test my igg/igm levels to get a narrower window of when I contracted CMV. The hope being I did not contract CMV for the first time while pregnant. Primary CMV infections had a higher probability of more severe symptoms versus someone having a reactivation. I received the next call from the specialist informing me my IgG/IgM levels showed a possible primary CMV infection during the first 6 weeks of pregnancy! I was devastated; did this mean our daughter had CMV? An amnio was never recommended because we were told there was no treatment if she did have it in utero (I later learned there is an anti-viral treatment trial going on). That is when our wait and see game began. Our specialist told us based off research and the findings of the IgG/IgM blood work that there was a 3% chance our daughter could have CMV. I felt a bit relieved hearing those odds, but then one of our monthly ultrasounds showed an abnormal spot on our daughter’s ventricle of her brain. They told us until she was born and they could get a better look through an ultrasound of her brain that we would not know what this meant. So for the next half of my pregnancy we prayed. I remember praying every night before bed that our baby girl would not be born with this awful virus.
As the waiting game continued we searched for names for our daughter. Brianna came up as one, the meaning= STRONG. How fitting for this lil’ angel of ours. Combined with my maiden name, Brianna Linn Giddens she would be. 38 weeks came and she was here, she was 8lbs and 12oz of perfect! She “appeared” healthy but we needed to get a urine test to see if she had CMV. I was optimistic she did not have any of the typical signs of a baby born with CMV (small head size, red spots on the skin aka petechiae) and she passed her newborn hearing test. We had hope! It was my 29th birthday when the doctor came in and informed us her urine tested positive for CMV. We cried, what did this mean for our beautiful baby girl? It meant a roller coaster of emotions for us and a list of specialists that Brianna would have to see. Was there treatment? Yes! An antiviral medication, Valcyte that could help with the potential neurological damage that CMV causes and progressive hearing loss associated with CMV. This is what was being recommended why would we not? Well we soon learned the drug that could help treat the virus was also risky. It could cause neutropenia, possibly fertility issues down the road for her, her blood would have to be taken every two weeks to monitor the risks associated with this drug. After learning she had multiple cysts on her brain, decreased amounts of white matter and enlarged ventricles in her brain it appeared to us the benefits outweighed the risks. We wanted to give her the best chances possible to preserve her hearing and gain any neurological benefits of the drug. So the monthly blood draws continued for six months while she got this medication.
I remember one of the many sleepless nights, one of the first few nights we were home with her, Googling CMV support at 3 in the morning and STOP CMV came up (now the National CMV Foundation) where parents could share their stories of how CMV impacted their child’s life. I cried as I read the stories. I was sad, angry and frustrated. Why did none of us know what CMV was? How did so many of us know about Down Syndrome or toxoplasmosis, but had never heard of CMV despite more babies being permanently disabled by CMV than Down Syndrome? So how do you prevent getting CMV? The advice is to practice good hand washing (which I was religious about), don’t share drinks with your other children or kiss them on the lips while pregnant as children in daycare have a high probability of already carrying CMV. I would share kisses and drinks with my 2 year old son Tyler all the time and yes he was in daycare. Had I known about the risks I would have avoided this. They tell us to avoid lunch meats and soft cheeses during our pregnancy, but mention nothing about how CMV can be prevented. This needs to change!
Our next chapter began with Brianna seeing all her specialists: an infectious disease specialist, an early intervention specialist, physical therapy, speech therapy, audiology, urology, ophthalmology, neurology and ENT. Interestingly enough when she finished her 6 month dose of Valcyte is when she began to lose her hearing. It started with one ear and is now in both her ears. It has continued to progress (one of the classic symptoms of CMV, progressive hearing loss. It is the leading cause of non-hereditary hearing loss in children), moderate to severe in one ear and moderate to profound in the other ear. I’ll never forget her first ophthalmology appointment wondering if she was blind? Yes, because CMV can cause blindness. Her first neurology appointment asking the doctor will she ever walk or run? Will she have any mental disabilities? The neurologist said we will have to wait and see. She told us Brianna will always be at risk for seizures due to the abnormalities found in her brain. She has been under antheshia multiple times for ABR tests, MRI’s, surgeries, but you know what? SHE IS THRIVING! She gets speech therapy three times a week, sees a Deaf Hard of Hearing teacher once a week to help teach her and us sign language and has physical therapy once a week in addition to all her other specialists. And she is considered to be mildly impacted.
Brianna is two and a half now and despite the odds of me having a primary CMV infection during pregnancy her vision is perfect, she is walking, talking and running! She knows a ton of signs, can sing her ABC’s and can count to 10. Her latest MRI showed all the cysts on her brain that were there at birth were gone! Although her Neurologist told us she will always be at a risk for seizures and there is a possibility her hearing loss could progress we have learned to focus on all the strides she has made and will continue to make! It’s taken me two and a half years to share this story, but I share it to offer hope to the Mother or Father Googling at 3 in the morning. Hope that despite neurological findings and hearing loss that that our baby girl is doing well. She is not only doing well, but she amazes us each and every day. They say as parents we are the ones here to teach our children, but I truly believe Brianna was brought to us to teach us; she has taught us to be grateful for the little things in life and to take things day by day.
- Shared by her mother, Megan
Posted: 2/4/2016 8:24:21 PM