by Lisa Saunders
(Photo caption, l to r): Lisa Saunders, former licensed childcare provider and founding member of New York Stop CMV Project; and Gail J. Demmler-Harrison MD, Attending Physician, Infectious Diseases at Texas Children's Hospital and Professor, Department of Pediatrics, Infectious Disease Section, Baylor College of Medicine (Congenital CMV Public Health & Policy Conference, Austin, TX ,September 2016).
Gail J. Demmler-Harrison, MD, Professor, Department of Pediatrics and Pathology and Immunology, Baylor College of Medicine, winner of the 2022 Master Clinician Award, is a pediatric infectious disease specialist who has been advocating for prevention of cytomegalovirus (CMV) throughout her entire medical career. An Attending Physician in Infectious Diseases at Texas Children's Hospital, she states that not providing CMV counseling is "a missed opportunity to save a baby from the devastating effects of CMV, including death in the womb and permanent disabilities'"(New York Times, Saint Louis, 2016).
According to the CDC, congenital CMV is acquired in utero and can result in serious birth defects in the baby. About 1 in every 200 babies is born with a congenital CMV infection. Of these babies, around 1 in 5 will have long-term health problems such as hearing and vision loss, microcephaly (small head), developmental and motor delays, and seizures.I am the mother of Elizabeth. She was born with a severely damaged brain from congenital cytomegalovirus (CMV) in 1989. At the time of my pregnancy, I was a professional child care provider, church nursery volunteer, and mother of a toddler--all situations that put me at higher risk for CMV, yet I never heard of it. Toddlers, especially those in group care, are often excreting the virus in their saliva and urine.
Dr. Demmler Harrison states, “Approximately 1-4% of all pregnant women will experience a primary CMV infection during their pregnancy. If you work in a child care setting, the risk increases to approximately 10%. If you have a toddler at home who is actively infected with CMV and shedding CMV in their saliva or urine, the risk is even higher, approaching 50% in some studies" (CMV in Pregnancy: What Should I Know, Texas Children's Hospital).
Dr. Demmler-Harrison, or Dr. Gail (the name she encourages us CMV parents to use), makes time for moms like me looking to learn more about treating or preventing congenital CMV. I first contacted her in 2006 after Elizabeth died during a seizure. I had had a tormenting dream about young parents still being unaware of CMV until it was too late to help their baby. When I looked online to see what was being done about CMV, I ran across the National Congenital CMV Disease Research Clinic and Registry, of which Dr. Gail is the spearhead. I contacted the Registry and asked if I could join forces with them even though Elizabeth had passed away. Dr. Gail not only welcomed me into the Registry, but for the last 16 years has answered my questions about CMV so I can write books and articles on it and seek legislation requiring testing and education. When I try to get media coverage about CMV, she makes herself available as an expert resource. Dr. Gail told one reporter why she keeps at her decades-long attempt to raise CMV awareness: “’I knew this was my mission’” (What every pregnant woman needs to know, Times Herald Record, 2009). Dr. Gail has even helped me produce videos by reviewing my content: Erie Canal Trail: Stop Cytomegalovirus (CMV) Birth Defects. Pass "Elizabeth's Law" - A7560/ S6287A.
Dr. Gail states, “CMV is the most common virus that most people have never heard of. And I want to change that. I can’t change that CMV is a common virus, but I think I can change people’s knowledge-awareness about it. I have been studying CMV for over 30 years now and I’ve been profoundly affected by my patients and their families. So that is why I started [with] CMV and that’s why I’m staying with it…I want people to be aware of CMV. I don’t want to scare them. I don’t want to alarm them. I just want them to be aware—to have their eyes open so they can be mindful and thoughtful about what they can do to protect their family and their unborn child. As one pregnant woman told me, when she had a baby born with CMV, she said, ‘Why did those who came before me, not warn me?’...she looks you in the eye and says, ‘If I’d only known, I would have done something-- I would have done those simple precautions, but nobody told me.’ CMV—it’s public enemy number one for me...” (CMV Ends With Me - Dr. Demmler-Harrison, National CMV Foundation, 2017).
Sometimes, mothers contact me with medical questions about CMV, but since I'm not a doctor, I refer them to Dr. Gail. I feel so good knowing she answers their questions and points them in the right direction. When I've tried to get CMV laws passed in the states I've lived in (most recently, Connecticut and New York), she wrote “Letters of Support” to my legislators to prove to them that CMV is real and that only education can prevent it. In her letter written to New York legislators in 2022, she concluded: "When mothers and fathers sit across from me in my CMV clinic holding their little baby and ask, 'Why weren't we warned about CMV,' it's heart-breaking. All I can say is, 'I don’t know, I’ve been trying for over 30 years to educate pregnant women about CMV'” (Letter from Gail J. Demmler-Harrison MD).
Despite the difficulties raising awareness of CMV, the often "silent" but deadly virus, Dr. Gail won't rest until ALL women know how to protect their pregnancies. She does whatever she can to shout a CMV warning from the rooftops--and even sports a personalized "CMV DOC" license plate on her car.
When asked why she chose to focus her medical career on CMV, she responded, “I was drawn to CMV, not because it’s easy, but because it’s hard. When I was a postdoctoral fellow, my mentor, Dr. Martha Yaw approached me...she put her arm around me and said, ‘I’d like you to be my post-doctoral fellow... looking at congenital CMV in pregnant women, and the long-term outcomes in their babies.’…So I slept on it... And said, ‘Yes. I like viruses. I like solving problems. This is going to be hard. And yes, I’ll do it.’ And that’s sort of the door that was opened for me. That I walked through, and I never left” (Interview, The Hou to Guide, 2020).
Dr. Gail has let me interview her several times in videos. In a video shot at the 2016 Congenital Cytomegalovirus Public Health & Policy Conference in Austin, Texas, I included an interview with one of her former patients, Caroline Bailey, a congenital CMV survivor and 26-year-old Master's college student at the time. She thanked Dr. Demmler-Harrion for the groundbreaking treatment she received just after birth and ended her story with what her life is like now--and with a very good question: "I am profoundly deaf, I have a cochlear implant and a hearing aid. But, I like to think I do pretty well in the world--I don't think I need much more than that. But, you know, it is surprising to me that more than 25 years after I was born that so many babies are still being infected with congenital CMV...It should be really just as well known as the Zika virus because the Zika virus and congenital CMV do many of the same things" (The Lisa Saunders Show: Cytomegalovirus (CMV)' (SEC-TV, 2017).
When Dr. Gail visited my public access TV studio in Connecticut, we both watched Debra Lynn Alt, Singer/Songwriter, perform her song, "Had I Knows (about CMV)", that captures how mothers feel when their child is born disabled by congenital CMV. It also captures what Dr. Gail has heard from mothers her entire medical career (The Lisa Saunders Show: CMV, 2018).
Dr. Gail has let me interview her several times in videos. In a video shot at the 2016 Congenital Cytomegalovirus Public Health & Policy Conference in Austin, Texas, I included an interview with one of her former patients, Caroline Bailey, a congenital CMV survivor and 26-year-old Master's college student at the time. She thanked Dr. Demmler-Harrion for the groundbreaking treatment she received just after birth and ended her story with what her life is like now--and with a very good question: "I am profoundly deaf, I have a cochlear implant and a hearing aid. But, I like to think I do pretty well in the world--I don't think I need much more than that. But, you know, it is surprising to me that more than 25 years after I was born that so many babies are still being infected with congenital CMV...It should be really just as well known as the Zika virus because the Zika virus and congenital CMV do many of the same things" (The Lisa Saunders Show: Cytomegalovirus (CMV)' (SEC-TV, 2017).
When Dr. Gail visited my public access TV studio in Connecticut, we both watched Debra Lynn Alt, Singer/Songwriter, perform her song, "Had I Knows (about CMV)", that captures how mothers feel when their child is born disabled by congenital CMV. It also captures what Dr. Gail has heard from mothers her entire medical career (The Lisa Saunders Show: CMV, 2018).
To learn more about Gail J. Demmler-Harrison, MD, visit :https://www.bcm.edu/people-search/gail-harrison-demmler-22821.
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Notes:
About Dr. Demmler-Harrison's 2022 Master Clinician Award From Baylor College of Medicine - Links to images from the Faculty Awards Day ceremony on May 19, 2022, the full list of award winners and the photo gallery of recipients. The Award honors "outstanding contributions by Baylor faculty members to the College’s clinical mission." Those eligible for nomination are "Faculty members involved in the direct care of patients, and in clinical areas such as clinical or translational research, patient safety and quality, clinical diagnostics and healthcare leadership" (bcm.edu/education/academic-faculty-affairs/faculty-resources/faculty-affairs-development/recognition/faculty-awards-patient-care)).
From the CDC Fact Sheets available in English and Spanish:
CMV Fact Sheet for Pregnant Women and Parents