Q&A with Mama Hu Hears
This month on the blog we had a chance to chat with Michelle Hu. Aud, Pediatric Audiologist. Michelle has turned her love for all things hearing and personal experience with hearing loss into an online presence for educating parents and professionals - Mama Hu Hears
. In this blog Michelle shares her clinical perspective and experience with congenital CMV related hearing loss.
Tell me a bit about your experience and background in pediatric audiology. What drew you to the field? Tell us a bit about your current practice and position/job.
I've been a pediatric audiologist at Rady Children's Hospital San Diego for the last 12 years. I love working with children, parents, and families. When I graduated, I knew that I wanted to start out in pediatrics because almost everything you use in pediatrics can apply to adults but not the other way around. What many people don't realize about pediatrics is that you're not just "playing" with kids all day - it takes a certain skill to be able to work with not only children but also parents. I grew up hard of hearing myself. I was identified around age 3 years when my preschool teacher told my mom I was going off on my own during story time. She recommended my parents get my hearing evaluated. My mom was shocked because I was developing spoken language in both Chinese and English, answering and conversing with everyone often. My hearing loss was due to EVAS and Pendred Syndrome - which is progressive. By the time I was 10 years old I had bilateral severe/profound hearing loss. I had another drop in hearing during my senior year of college at CWRU - I was waiting in the lobby to get my hearing evaluated when my mom looked over and suggested I'd make a good audiologist since I would be able to relate to patients with hearing loss. This was great because I had been waffling between majors and wasn’t 100% yet sure what I wanted to do. Luckily my pre-med, chemistry and sociology coursework fit well in preparing me for doctorate school! I've been practicing for over 12 years now at Rady Children's Hospital San Diego and recently @mama.hu.hears on Instagram and created an LLC since starting my online course, "My Child Has Hearing Loss, Now What?" which empowers parents/family in paving their own DHH journey.
Hearing loss affects many children and adults in the congenital CMV community. Tell us about how you first learned about congenital CMV. What is unique about congenital CMV-associated hearing loss?
I'm sure I learned about congenital CMV in my course work, but I don’t remember getting tested. I saw my first patient during a 3rd year rotation at the Cleveland Clinic. He was about 4 years old but had a severe case. Unable to walk, control his limbs, talk and I don't recall if he could see very well. Parents chose cochlear implantation, and the results were amazing. He responded to voices with smiles, constant vocalizations, and clapping. Parents were very happy with their choice even though his life expectancy wasn’t the greatest.
Over the last few years more states and hospitals have started screening infants who fail their newborn hearing screen for CMV. How has this changed your practice or the field?
Thank goodness they have. I wish they'd test regardless of if they have failed their UNHS. Why not since they are already doing a slew of tests? I do not work with electrophysiological testing, but my son (3rd child) failed his UNHS. He passed later but after he failed, I was pleased to see the screener complete a cCMV test immediately.
As far as my practice - nothing has really changed in my department. I believe once we know they are CMV+ we check every 3 months. Sounds excessive I know but we've caught many within this small time window and parents are thankful. For me whenever I do a case history and parents say they failed their UNHS I make sure to ask if they did a cCMV test.
What advice would you have for parents of a newborn with sensorineural hearing loss and congenital CMV?
At the foundation, that their child is still their child before and after the diagnosis. That they can still become whatever they dream of. Many parents have dreams for their children, only to find out their children are individual and independent beings who are NOT their parents, regardless of being DHH or not. Being DHH doesn’t change that. We are just differently abled. :) When they have cCMV I recommend and clarify with parents why they need to come in for what feels like constant testing. I had progressive hearing loss myself, so I share a little bit about my personal experience when it's appropriate to give them some insight. I could verbalize and communicate what was going on for me though - their child may not yet be able to! I would also let them know it is THEIR journey. Find the professionals and people they feel comfortable with, who support and empower them as part of their village. Being a DHH family is a lifelong, not just a short chapter.
Many infants with congenital CMV are born with normal hearing but may still be at risk for developing hearing loss later in life. Can you tell us a bit about your clinical approach to follow-up and monitoring? How do you counsel families?
Once we know a patient is CMV+ we encourage testing every 3 months, 6 months max. We tell them it can happen overnight, in an instant and with the young ones we cannot visibly tell because it can affect only one ear at a time. I believe our ENT works with Infectious Diseases regarding implementing a 6-month cycle of Valganciclovir.
Other than audiologic follow-up, what other recommendations do you have for families of infants and children with hearing loss?
This is THEIR journey as a DHH family. Find the professionals and people they feel comfortable with, who support and empower them as part of their village. Being a DHH family is a lifelong, not just a short chapter. After over a decade of working with patients and their families - I've put together an online program to help empower parents who are overwhelmed, anxious and uncertain with how to take this journey into their own hands. It includes videos, resources, how to prepare for audiological testing, interviews with hearing parents of deaf children, Deaf parents of hearing and Deaf children, interviews with hearing healthcare professionals, people you need in your corner when you approach school age, etc. I give topics to explore as a family, with your co-parent, with your child - things to think about, things to role model to promote advocacy and confidence. It's all packaged in there no matter what path you choose; it's meant to educate, provide resources, and reinforce that the choices are THEIRS. If an online program isn’t for you - I share still share TONS online via my Instagram from both my personal and professional DHH journey.
Tell us about some of the recent exciting advances in the field of pediatric audiology? Anything on the horizon or specific to congenital CMV?
Technology is always changing, cochlear implantation is available to more than just those with severe/profound hearing loss, DHH inclusive communities are getting more awareness/spotlights, etc.!
What are your top three resources (books, websites, blogs etc.) for families of infants with hearing loss or at risk of hearing loss?
Resources are ABUNDANT - however almost too abundant as it's overwhelming how much information is out there and how to navigate it all. That's why I created my course - to save TIME and ENERGY sorting through it all! I also offer personal experiences as a DHH child, adult, and now mother.
-Hands and Voices
-EHDI (Early Hearing Detection and Intervention)
There’s a lot of misinformation out there about congenital CMV, even in the audiology community. What are the three most common misconceptions that you’d like to clear up?
Gosh that people think it's harmless just like "regular" CMV, that only a few people are affected, and that it can’t be prevented or shouldn't be something that's taken so seriously!
Category: Awareness, "Basic Facts", Clinical, Recommendations