What is Cytomegalovirus (CMV)?
Cytomegalovirus (CMV) is a leading cause of birth defects around the world and is the number one infection that causes birth defects in the U.S. CMV is a common viral infection that usually goes unnoticed or only causes mild symptoms in most people. But if a woman becomes infected with CMV while she is pregnant, she can pass the infection to her unborn baby. This can cause her child to suffer long-term disability due to birth defects, including hearing loss, or even death in very severe cases.
In spite of the detailed knowledge about the epidemiology and pathogenesis of CMV infections in pregnant women, this infection remains largely unknown to the majority of women in the United States. Few, if any, pregnant women are routinely screened for CMV infections during pregnancy. Currently, there is no approved vaccine against this devastating virus. That is why it is so important that we work together to make sure investigational vaccines are safe and effective to protect the most vulnerable against infection.
CMV Testimony Q&A (Anonymous Mother)
What is your personal connection to CMV?
My son (now five years old) was diagnosed with CMV shortly after he was born. He failed his newborn hearing screening and further testing showed that he had bilateral hearing loss. Since CMV is the most common cause of congenital hearing loss, it was one of the first avenues explored when trying to determine the cause of his hearing loss. Testing suggested that I was exposed during pregnancy and passed the virus to him in utero.
How has CMV affected your life and those around you?
My son’s hearing loss progressed to the point of being profound across all frequencies. He was receiving no benefit from hearing aids and ultimately underwent two surgical procedures to obtain cochlear implants. The first procedure occurred when he was one year old and the second when he was two. His first three years of life were consumed with doctor’s appointments, therapy sessions, audiology visits, and more. Quite a contrast to the slow days of attending storytime at the library and frequenting the park, as I did with his older sister. His cochlear implants have provided excellent access to sound, but it’s taken immense amounts of effort for him to develop spoken language skills. Additionally, the virus affected his vestibular system and he constantly combats issues related to poor balance. He also has had to work hard in physical therapy to improve muscle tone and strength.
Were there treatment options available to you when you had CMV?
Since I didn’t know that I had CMV, no. No one ever told me about CMV during my pregnancies, let alone tested for it. Once my son was diagnosed, he did a round of antiviral medication that was being given as a trial. It’s hard to say if it helped. His hearing loss worsened even after taking the antiviral.
Based on your experience, what would you like other women to know about CMV?
I would like other women to know that CMV exists, how it is transmitted, and how they can protect themselves. It’s such a common virus that trying to avoid it all together seems impractical. Especially if you have toddlers or work with young children. It’s important to know that basic hygiene is the best protection—frequent and thorough hand washing (especially after diaper changes), and not sharing utensils or cups with young children for example.