|Peyton Stephens is an Auditory-Verbal Therapist at the Center for Hearing and Speech. She was diagnosed with Cytomegalovirus (CMV) and her son was at risk for Congenital Cytomegalovirus (cCMV) due to her infection. In Honor of June CMV Awareness Month, Peyton discusses what CMV is, how it has impacted her and gives words of wisdom to parents and children who are affected by CMV!|
1. Can you briefly explain what CMV is? What are some symptoms?
Cytomegalovirus or (CMV) is a virus that's a member of the herpes virus family. When healthy adults and kids get CMV, it looks like a common cold and is harmless to the general population. Symptoms include sore throat, fever, fatigue and swollen glands. The CMV virus can be passed from mother to fetus during pregnancy. When a baby gets CMV before birth, it's referred to as congenital CMV (cCMV). Congenital CMV is the most common preventable cause of neonatal disability in the United States. More children will be born with disabilities due to cCMV than many other well-known syndromes and infections which includes Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida and HIV/AIDS. Congenital CMV is also the leading cause of non-genetic hearing loss in children.
2. How has CMV directly impacted you?
I was diagnosed with a primary CMV infection during pregnancy with my second child, Sawyer. In January of 2014 one of my colleagues recommended I get tested for CMV. My OB never mentioned it to me in her guidance about what to avoid during pregnancy, but agreed to test me. My numbers came back alarmingly high for a current/recent infection. My Sawyer was at risk for getting CMV from me and being permanently affected by it. We received high-quality medical care from an extremely knowledgeable team of doctors, and thankfully Sawyer was born without cCMV in August of 2014.
3. How is CMV treated? Are there ways to prevent it?
There is currently no vaccine for CMV. CMV can be treated with anti-viral medications developed for use in infants. There is also a drug in the clinical trial phase being used to treat CMV during pregnancy. I'm hopeful that it will be FDA approved in the future.
CMV is absolutely preventable. This is the part I wasn't aware of when I got pregnant with Sawyer. Because CMV is a cold like virus, it is easily transmitted from toddlers/kids to their pregnant mothers. There are three simple steps to protect yourself during pregnancy:
1) Do not share food, toothbrushes, drinks, or utensils with your children (or anyone really).
2) Do not kiss your children on the mouth (a cCMV-safe kiss is on the top of the head :) )
3) Wash your hands thoroughly after wiping a nose, changing diapers and interacting with kiddos' bodily fluids.
Trust me, I know these aren't easy for moms of toddlers. I've been there. I'm fairly certain I got CMV from eating after my toddler (one bite for him, one bite for me), potty training him, and kissing him on the lips. But, it would have been worth it to follow the precautions if it meant I could have avoided the invasive medical care I required during pregnancy.
4. How does your experience with CMV help you relate with some of the patients/families you serve at CHS?
As an Auditory-Verbal Therapist at CHS I treat many clients that have hearing loss secondary to cCMV. Daily I am touched by families that have been affected by cCMV. Many of them have shared with me how they had no idea what CMV was prior to their child's birth and how they wished they had known how to prevent it. I can completely relate to their anger about the lack of knowledge surrounding CMV and have lived with the fear of not knowing what would happen to my child. Their stories humble me and I know that my family is incredibly blessed and lucky that our Sawyer was born healthy. I am inspired by them to help change the face of cCMV and bring awareness and knowledge to everyone I meet. Last year I went with a team of amazing CMV moms, physicians and survivors to Austin to testify in front of the Texas Health and Human Services Committee in support of legislation to promote CMV education and awareness. I will continue to support such efforts for both my Sawyer and all of the families I work with.
5. What is your advice to parents and/or children that are affected by CMV?
You are inspiring! You are your child's best advocate and many of you have worked tirelessly to confirm diagnoses and get to the bottom of a probably seemingly endless diagnostic nightmare. I see the endless hours of work you put into helping your child be successful and happy. Know that my colleagues and I are cheering you on and hope that we can provide you with the support and services you need to help your child thrive! I will never stop fighting to Stop CMV!
We're proud to have Peyton and one of our audiologists present at the Congenital Cytomegalovirus (CMV) Public Health and Policy Conference September 26 and 27 in Austin, TX.