Community Alliance Chair Spotlight: Elizabeth deLoach, South Carolina

Community Alliance Chair Spotlight: Elizabeth deLoach, South Carolina

Author: Elizabeth deLoach AVT

My name is Elizabeth deLoach. I am an auditory-verbal therapist/speech-language pathologist
in Greenville, South Carolina. My story is slightly different because I have no children of my own
affected by CMV, but as someone who specializes in treating children with hearing loss, I am no
stranger to this diagnosis.

As my journey as an auditory-verbal therapist progressed and my caseload increasingly filled
with children with hearing loss, I began seeing "congenital cytomegalovirus” or “suspected
congenital cytomegalovirus” appear more frequently during chart reviews for new patients.
Concurrently, I attended the American Cochlear Implant Alliance Conference with my mentor
where we attended several seminar sessions on CMV, outcomes of children diagnosed with
CMV, the need for education on CMV, etc. These things combined really lit a fire in me, and I
started to do more research independently. I completed several online courses, including one
led by Megan Pesch through Hearing First, which ultimately introduced me to the National CMV
Foundation. I knew I wanted to get more formally involved, but needed to understand more.
Amanda Devereaux generously met with me where I developed a more comprehensive
understanding of CMV and its outcomes.

I took it upon myself to educate my friends, hosting a “CMV Presentation” because it felt wrong
to keep such critical information to myself at a stage in life when many of us are beginning to
have children. Unsurprisingly, not a single one of my friends had heard of CMV. I later presented
the information to two outpatient pediatric rehabilitation departments where only a handful of my
colleagues were familiar with CMV. Through these experiences, I realized I wanted to become
more formally involved and applied to serve as South Carolina’s CCA.
My biggest passion regarding CMV is education. How is it that 91% of pregnant women do not
know about CMV when one child is permanently disabled by cCMV every hour? Like I
mentioned, to keep this information to myself seems selfish and wrong. In SC, there are no
laws/regulations regarding maternal education on CMV, and in most hospitals, babies are
screened ONLY if they are symptomatic (which 90% of cases are asymptomatic at birth). Under
this system, many cases are left undetected and leave parents feeling blindsided by a diagnosis
they had never even heard of. Almost all of my patients’ mothers reported they had no prior
knowledge of CMV, but believe that with basic education, they would have taken preventive
steps.

So far, 19 states overall have passed legislation requiring CMV education, newborn screening,
or both. Geography should not be a determining factor to access for education and support
regarding anything to do with CMV, if we can make it something more universally discussed.
I personally think it’s up to people like us to of course advocate for policy change, but maybe
even more importantly, engage in everyday awareness by spreading the word. Girls- don’t be
afraid to ask doctors and OB/GYN’s about CMV, and request a screening panel, because it is
YOUR right. During the month of June, share information on social media, and talk to your
friends about CMV. You may be surprised at how you could change someone’s life.