Monday, January 14, 2019

CT Mom and Doctor Collaborate to Prevent CMV Birth Defects

Dr. Brenda Balch (l) appeared on the Lisa Saunders Show in April 2017 to discuss Connecticut passing House Bill 5525: "An Act Concerning Cytomegalovirus [CMV].” To watch, click here  (Balch interview begins 9 minutes in after  the interview with CMV expert, Dr. Gail Demmler-Harrison, and CMV survivor, Caroline Bailey)

A Connecticut Pediatrician Continues Collaboration with Mother to Prevent Connecticut's #1 Birth Defect Virus, CMV

  • Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics (AAP) Early Hearing Detection and Intervention (EHDI) Chapter Champion
  • Lisa Saunders of Mystic, Connecticut, mother of a girl born disabled by congenital CMV and leader of Child Care Providers Education Committee, National CMV Foundation


Mystic, Conn--I’m Lisa Saunders, a mother who didn’t know about cytomegalovirus (CMV) until my daughter, Elizabeth, was born severely disabled by congenital CMV in 1989. Ever since I met Dr. Brenda Balch in 2014, we have been collaborating to help prevent the kind of suffering Elizabeth endured for 16 years until her death in 2006. Dr. Balch has been the American Academy of Pediatrics (AAP) Early Hearing Detection and Intervention (EHDI) Connecticut Chapter Champion since 2006 and Regional Network Liaison for District I since 2015.

Dr. Balch was instrumental in helping me to get Connecticut to pass House Bill 5525: "An Act Concerning Cytomegalovirus”. She testified in Hartford and visited the capitol several times. In 2015, Connecticut became the second state to require newborns who fail their hearing screen be tested for CMV. Many healthcare professionals have since learned about CMV. 

Dr. Brenda K. Balch, CT’s American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion (left), Casey Famigletti and Lisa Saunders, CMV mothers, testified in favor of CMV prevention education and testing newborns for CMV who fail their hearing screen in 2015. 

Ceremonial signing for Public Act 15-10: An Act Concerning Cytomegalovirus at the Office of Governor Dannel P. Malloy on July 28, 2015. (L to R): Jane Baird, Government Relations, Connecticut Children's Medical Center; Dr. Wallis Molchen, Chief Resident, Connecticut Children’s Medical Center; Jane Brancifort, Deputy Commissioner, Connecticut Department of Public Health; State Representative, John Hampton; Dr. Brenda K. Balch, American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion; Lt. Governor Nancy Wyman; Lisa Saunders, parent rep, Congenital Cytomegalovirus Foundation, holding picture of daughter Elizabeth; Kevin Ryan, State Representative; Governor Dannel P. Malloy; Cathy Osten, State Senator; Ken Hiscoe, Pfizer, Government Relations; Jarred and his mother, Melvette Ruffin; DeVaughn Ward, Liaison, Department of Public Health; and Kinson Perry, lobbyist at Rome, Smith and Lutz.

Dr. Balch, a consultant for Connecticut Department of Public Health (CT DPH), helped DPH implement the law by:
1)     Creating CMV content for DPH website: https://portal.ct.gov/DPH/Family-Health/EHDI/CMV
2)     Revising the Hospital Service Delivery Flow Chart to reflect additional CMV steps
3)     Updating Connecticut’s hearing test brochure for families to include information on CMV testing and prevention.
Collaborating with DPH, Dr. Balch created:
·        Resource sheet for pediatric care providers, “The Role of the Primary Healthcare Provider in Cytomegalovirus Screening” and “Follow Up Recommendations and Monitoring.”
·        Fact Sheet for OB/GYNs and a Parent brochure, both emphasizing CMV prevention:
o   Worked with the National CMV Foundation to add the CT DPH logo to “Are You Pregnant” National CMV Awareness Flyer.

In September 2018, I filmed Dr. Balch briefly commenting on how the Connecticut CMV testing law was implemented and the data received to date since the CMV testing law went into effect in 2016. To watch it, click here (CMV Public Health and Policy Conference, Burlington, Vermont). 

Dr. Balch continues to educate the public about CMV, particularly child care providers who are unaware of their occupational hazard. She co-authored a study with doctoral students of audiology at the University of Connecticut entitled, "National Child Care Provider's Awareness of Congenital Cytomegalovirus”. To help me in my CMV efforts, she:

  • Appears on TV with me to discuss CMV.
  • Accompanied me to visit a local child care director and their consulting nurse to discuss CMV and how to educate their workers.
  • She actively creates educational materials as a member of the Child Care Providers Education Committee, National CMV Foundation, which I lead.
  • Co-authored my poster, "Increasing Child Care Provider Awareness of Congenital Cytomegalovirus (CMV)" for the CMV Public Health and Policy Conference, Vermont (September 2018): 



Lisa Saunders and Dr. Brenda K. Balch, co-authors of poster, "Increasing Child Care Provider Awareness of Congenital Cytomegalovirus (CMV)," at the CMV Public Health and Policy Conference, Burlington, Vermont (September 2018).



Regarding her EHDI work:

1. Serves as CT EHDI coach for Connecticut Pediatricians’ for the American Board of Pediatrics, Part 4 Quality Improvement Project on Infants with hearing loss.
2. Developed and implemented a unique Physician-to-Physician Coaching Project supporting EHDI initiatives.
3. Provided physician education on infants/children who are Deaf/Hard of Hearing in primary care offices through the Educating Practices in the Community (EPIC) program.
4. Presented at the annual EHDI conference in 2011, 2012, 2013, 2014, 2015, 2017.

Dr. Balch also participates in multiple medical missions internationally with non-government agencies (NGO's) and in the US as a Medical Officer for the National Disaster Medical System (NDMS).

If you want to work toward reducing congenital CMV, mom and doctor alliances can be very powerful! Please let me know if you want to help prevent the leading viral cause of birth defects.

Sincerely, 

Lisa Saunders,
Leader, Child Care Providers Education Committee
National CMV Foundation, Inc.
PO Box 389, Mystic, CT 06355, lisa.saunders@nationalcmv.org

About Lisa Saunders
Lisa Saunders was instrumental in helping Connecticut become the second state in the U.S. to pass a law requiring newborns be tested for CMV if they fail their hearing screen. She is still trying to raise awareness through public speaking, TV interviews, books, and through articles such, "The Danger of Spreading CMV: How We Can Protect Our Children" (ChildCare Aware of America, June 2017) and "Help Childcare Providers Fight CMV” (National CMV Foundation, March 5, 2018).  To learn more about her work, click here or visit her blog at: congenitalcmv.blogspot.com

Back up information on the collaboration of Saunders and Balch: 



Balch, B., and Saunders, L. (2014). Congenital Cytomegalovirus. Health Watch. (C. Barry, Interviewer) Ledge Light Health, Groton Municipal Television.
Balch, B., and Saunders, L. (2015). Preventing Congenital CMV During Pregnancy. WTNH (CT Style). Retrieved from https://www.wtnh.com/ct-style/preventing-congenital-cmv-during-pregnancy_20180412100525793/1118490960
Balch, B., Saunders, L., and Alta, D. L. (2018, June 18). Mystic mother raises awareness of CMV, a risk for pregnant women and their babies. (S. Cody, Interviewer) News 8, WTNH. Retrieved from https://www.wtnh.com/on-air/connecticut-families/mystic-mother-raises-awareness-of-cmv-a-risk-for-pregnant-women-and-their-babies/1235975184
Balch, Brenda K., MD. (2015, February 20). HB 5525 Testimony. Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Brenda%20Kinsella%20Balch,%20MD.%20AAP%20Connecticut%20Chapter%20Champion%20for%20the%20Early%20Hea
Balch, Brenda K; Saunders, Lisa. (2016, September 27). As One Door Closed, Another Door Opened: CT Congenital CMV Initiative; Presentation at Congenital CMV Public Health & Policy Conference, Austin, TX. Retrieved from https://drive.google.com/file/d/0B9Klfxar2Cmjc2g1eWJ5YXFpVmtHaHVuSGFKYVlZTG54bW9z/view?usp=sharing
Balch, Brenda K., MD, commenting on CT CMV testing law effective 2016. (2018, September). Burlington, VT. Retrieved from https://drive.google.com/file/d/1mm0C_bpfO4s6hy-kvhWZsWL2laaHyhDA/view?usp=sharing (filmed by Lisa Saunders)
Cody, S. (2014, April 28). Mother on a mission to stop birth defects (Lisa Saunders and Brenda K. Balch, MD). Retrieved from Fox CT: http://foxct.com/2014/04/28/mother-on-a-mission-to-stop-birth-defects/
Demmler-Harrison, G., Balch, B. K., and Bailey, C. (2016, Sept and 2017, April 19). Pediatricians and CMV Survivor. Cytomegalovirus (CMV), CT law, and a CMV Survivor . (L. Saunders, Interviewer) Austin, TX and Groton, CT: Lisa Saunders Show. Retrieved from https://www.youtube.com/watch?v=37tUXcPCYzs&t=378s
DeWald, Olivia; Turovac, Casey; Balch, Brenda; Cienkowski, Kathleen. (2018). National Child Care Provider's Awareness of Congenital Cytomegalovirus. Poster session presented at Early Hearing Detection and Intervention (EHDI) Conference in Denver, CO.
News 8, WTNH . (2018). CMV Awareness. Retrieved from https://www.facebook.com/sarah.cody.10/videos/1421707187974926/
Saunders, Lisa; Balch, Brenda K., MD. (September 2018). Poster "Increasing Child Care Provider Awareness of Congenital Cytomegalovirus (CMV)". Burlington, Vermont: CMV Public Health and Policy Conference. Retrieved from https://congenitalcmv.blogspot.com/2018/08/references-for-poster-increasing-child.html




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