Later Onset Hearing Loss
Learning about CMV
By Kimberly Widner, Nebraska H&V
Did you know that congenital cytomegalovirus (cCMV) is the most common non-genetic cause of hearing loss for infants born in the United States? Or that one child is permanently disabled from cCMV every hour? Did you know that one in every 200 children born in the United States are born with cCMV? However, only 9% of the population has even heard of CMV. I was in the 91-percentile group until last fall.
My family’s CMV Journey started in October 2021. My four-year old daughter, Bailey, began to tell me she had a “loud ear and a quiet ear”. I acknowledged her complaint, but we went on living our normal lives. A week later, Bailey again mentioned her quiet ear, even stating the same ear “was asleep”. This prompted a visit to her pediatrician, where Bailey received her first hearing screening since her newborn hearing test at the hospital. Bailey heard nothing on her right side.
This news led to lots of additional testing and Bailey was quickly diagnosed with single-sided deafness or profound hearing loss in her right ear.
To say my husband and I were shocked is an understatement. We have no family history of deafness. Bailey didn’t have reoccurring ear infections as a baby, and there were no other red flags to suspect a hearing loss as a diagnosis. Bailey has always been my loud and rambunctious child, but I never thought she was loud due to a hearing loss.
Bailey underwent a multitude of tests to determine the cause of the hearing loss and assess her candidacy for a cochlear implant. Testing included vestibular (balance) testing, neurology, ophthalmology (vision), speech assessments, MRI and CAT scans just to name a few. I distinctly remember sitting in the neurologist’s office going over her MRI scan results. This visit was only supposed to determine if Bailey would qualify for a cochlear implant; instead, my husband and I ended up learning that Bailey had been impacted by a virus called cytomegalovirus or CMV.
This was the first time I had ever heard of CMV. I went through and am still going through a long phase of guilt. How could a mother of two children know nothing of a common virus that could cause such significant harm to my unborn child? How come CMV was never mentioned during any prenatal appointments or at any well-child visits with our pediatricians? Why wasn’t my daughter screened for CMV immediately at birth when she failed the newborn hearing test in her right ear?
All of these questions led me to research CMV more thoroughly. The more I researched, the more I was shocked by the lack of awareness, education, and screening for CMV. I decided immediately I wanted to become an advocate for CMV so no other child or family will have to go through the same difficulties Bailey has faced thus far.
Looking back on my pregnancy and Bailey’s childhood, there were several missed red flags by numerous medical professionals. Had I known more about CMV, maybe I could have done more or pushed her medical team for further testing. Many states have passed laws or are currently in the process of reviewing proposed legislation to require health departments and health care providers to educate and raise awareness of congenital CMV to targeted groups (expecting moms and families, childcare workers, pediatricians, OBGYN medical staff, birthing centers, etc.). A few additional states have even successfully passed targeted legislation to require that an infant be tested for cCMV if the baby fails any newborn hearing test.
Nebraska, where my family resides, does not currently have any existing CMV legislation. I have teamed with other Nebraska CMV families and have met with several Nebraska Senators to lobby for CMV legislation. At this time, CMV education legislation is slated to be introduced at the next session (January 2022).
Bailey will continue to fight the impacts of Congenital CMV (cCMV) for the rest of her life. Along with her single sided deafness, Bailey has vestibular balance loss. She has received occupational and physical therapy to help with her balance and fall prevention, but Bailey will need to continue to work on these skills for the rest of her life. Bailey also has significant white matter brain loss, or brain calcifications, along with brain ventricle cysts. At this time, we are working closely with her neurologist and care team to monitor what, if any, impact this will have on Bailey. Possible concerns include ADHD, autism, and seizures.
This past year has turned Bailey’s world, and my family’s world, upside down. Bailey is a brave, courageous CMV warrior, but is already tired of all the doctor’s appointments she has to endure. It is almost impossible to explain to a 5-year-old why her ear is “asleep” and will never fully wake up, or explain why her older sister doesn’t have the same medical issues and appointments, or try not to break down in tears when she asks Santa if he can bring her a working ear.
Please help us spread CMV awareness. Early detection, screening and education is essential to and can impact lives. If interested in helping with efforts in Nebraska, please contact me at widnerkimberly@gmail.com. See other state legislation here: https://www.nationalcmv.org/about-us/advocacy ~
H&V Communicator – Winter 2012