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Mom of Child with Severely Damaged Brain Releases Memoir
"Had I Known about CMV: From Shock to Law" by Lisa Saunders
Recently, a friend told me, “I warned my pregnant daughter about CMV, but she said, ‘Mom, if CMV was a problem, my doctor would have told me’.”“No, they probably won't,” I said, frustrated that so little has changed since my daughter Elizabeth’s birth 35 years ago. The moment she was born, I felt a stab of fear. My immediate thought was, “Her head looks so small – so deformed."
This memoir is my heart laid bare. My desire is that it will help people experiencing their own hardships to find hope in the midst of adversity and that those who seek to raise awareness will find new ideas. Elizabeth will never have descendants, but perhaps, through her story, more children will be born healthy because their mothers knew how to stop CMV.
Part I is about my life with Elizabeth (1989- 2006), including the family, friends, and strangers who comforted or inspired me. I eventually learned how to deal with my shock over Elizabeth’s profound brain damage by journaling, searching the Bible for relevant Scriptures, and by swallowing the occasional Valium. One Scripture that helped me move from deep depression to eventual joy was, "Perfect love casts out fear" (1 John 4:18). I learned to dwell on just loving Elizabeth and not her prognosis.Part II is about the challenges of raising CMV awareness and the CMV warriors I’ve met along the way between 2006-2024. In 2015, while living in Connecticut, I collaborated with parents and doctors to help the state become the second to pass a targeted CMV testing law. Later, returning to our home state of New York, I helped get “Elizabeth’s Law,” named in memory of our daughter, passed in 2022. It requires the provision of CMV educational materials to pregnant women and child care providers. And now, as a result of an army of CMV advocates, the STOP CMV Act 2024 was introduced at the federal level.
2018
After reading the New York Times article, “CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed,” New York Assemblymember Linda B. Rosenthal thought something needed to be done. She was able to get a targeted CMV testing law passed in 2018. A587C/S2816 “Requires urine polymerase chain reaction testing for cytomegalovirus of newborns with hearing impairments”.
2019
"Childcare workers, early interventionists, early childhood providers (including daycare providers, pre-school teachers) and Healthcare workers (including nurses, therapists)” are at increased risk for CMV stated Nellie Brown, MS, CIH, Director of Workplace Health & Safety Programs, Lead Programs Manager, Certified Industrial Hygienist, ILR Outreach Statewide and Buffalo Co-Lab, ILR School, Cornell University, in her presentation, “Occupational Exposure to Cytomegalovirus (CMV): Preventing Exposure in Child Care and Educational Settings, Including OSHA Advisories, 2019)”. Nellie Brown said, “Universal precautions are work practices and they work very well for bloodborne pathogens such as HIV and HBV.”
2021
On April 20, 2021, New York legislators filed the CMV education bill, S6287C/A7560, named “Elizabeth’s Law,” in memory of my daughter. “Trail Works Inc. Recognizes CMV Awareness on National Trails Day” on June 5. Children featured in the music video of the event, “Had I Known [about CMV], Lyrics and Music by Debra Lynn Alt,” included mine (through a photograph), Jessica Keukelaar’s and Kristin Schuster’s (we three were caregivers/teachers during our pregnancies). Over 70 families unable to attend asked that their child’s name be placed on a silver rock.
In 2021, “Elizabeth’s Law” passed in the Senate, but the Assembly didn’t vote it by the end of the legislative session. As I awaited the 2022 legislative session to resume, Jim and I continued to leave silver “Stop CMV” rocks across New York State to raise awareness of the bill: “Erie Canal Trail: Stop Cytomegalovirus (CMV) Birth Defects. Pass "Elizabeth's Law" (Nov. 2021). Tabitha Rodenhaus of Kenmore paints the Stop CMV rocks in front of her daughter Kaia (born with congenital CMV in 2016) because she enjoys watching her mom work.
CMV is "'a virus that has a PR problem...It's a virus we have recognized for over 60 years as the cause of birth defects and brain damage in infants...'" stated Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children's Hospital (“Dr. Sallie Permar's Work Protecting Mothers, Infants from HIV, CMV Lands Her Among 'Giants'”, 2021)
2022
Nov 28, 2022: New York Governor signed “Elizabeth’s Law,” named in memory of my daughter. S6287C/A7560, which “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.”
2023
New York: on September 20, 2023, a universal CMV testing bill was filed, A07997/S07659, which "requires cytomegalovirus screening for every newborn..."
"The New York State Department of Health announced that effective October 2, 2023, all babies will be screened for Congenital Cytomegalovirus (cCMV), making New York the second state in the nation, after Minnesota, to screen all babies for the virus". The NY Newborn Screening Program is provisionally adding congenital CMV (cCMV) to its "screening panel for a period of one year" using dried blood spot (DBS) (“Congenital Cytomegalovirus (cCMV) Screening | New York State Department of Health”). The goal of testing every newborn for cCMV for one year is to help answer questions about whether or not universal cCMV screening can be successful nationwide. They need to see if cCMV can be detected by dried blood spot newborn screening and "Is catching and diagnosing cCMV at birth helpful?" It is believed that "Screening in a diverse population like New York will help determine true incidence" (Bradley). (To learn more about the pilot study, visit: www.proactivenys.org, or contact Andrew Handel, MD, Renaissance School of Medicine at Stony Brook University at: andrew.handel@
USA TODAY's article, "This virus is a leading cause birth defects. Why isn't it screened more?" (Oct. 2, 2023) explains New York’s one-year study: “With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law [John W. Mannion, Senate sponsor], now has a bill before the Legislature following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening. The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program..." (Cuevas).
2024
STOP CMV Act 2024 was introduced on March 5th at the federal level. Republican sponsor, Congressman Mike Lawler of the 17th District, New York, attended my daughter Elizabeth’s funeral services 18 years earlier in 2006 (he was a classmate of my older daughter when in high school). Congressman Lawler and I corresponded in 2022 about “Elizabeth’s Law” (he was Assemblyman Lawler then), and in June 2023, his staff met with National CMV Foundation board member, Dr. Sallie Permar, the chair of the Department of Pediatrics at Weill Cornell Medicine. Congressman Lawler told me, “They asked me to introduce this bill in the House." And he did! I sent Congressman Lawler one of the silver Stop CMV rocks as a thank you. If you live in the United States, please ask your congressman and U.S. senators to cosponsor the STOP CMV Act 2024 (learn how, with sample letter templates, at: “CMV Legislation | National CMV Foundation”).