Telling a Mom Her Newborn May Have Hearing and/or Vision Loss
By Lisa Saunders
Part 1 – What is CMV, Learning the Diagnosis & Move Forward
The leading cause of hearing loss, after heredity, is congenital cytomegalovirus (CMV). Congenital CMV is also a cause of vision loss. The CDC states, “About 1 in 200 babies is born with congenital CMV infection. About 1 in 5 babies with congenital CMV infection will have birth defects or other long-term health problems.” In October 2023, New York State began testing every newborn for CMV for a one-year newborn screening pilot program. This means that mothers of newborns who tested positive for CMV, have the potential to hear that their child may develop hearing loss and/or vision loss as they age.
Presenting the possible outcomes of congenital CMV (or cCMV) to a mother is difficult news to deliver, and even harder for a mother to process. When my daughter Elizabeth was born in 1989 with obvious microcephaly (small, damaged brain), the following day I was told by a neonatologist that Elizabeth had tested positive for congenital CMV. I learned I had contracted CMV while pregnant, most likely from the toddlers who were under my care and passed it on to Elizabeth while she was developing in my womb. (If only I had known to reduce my chances of getting CMV by being more careful when handling the saliva and urine of young children.) The doctor said, “Of all the cases I've seen, Elizabeth's is the worst. She will never roll over, sit up, or feed herself. Her color is bad, her cry is strange, and she startles violently whenever people touch her. I don't know if she can see or hear.” That was 35 years ago, but I remember that conversation as if it were yesterday.
According to the article, “Improving the way healthcare professionals deliver different news to families during pregnancy or at birth: a qualitative study,” receiving news of a child’s learning disability “had a significant impact on parents’ emotional and mental wellbeing. They remembered how professionals described their child, the quality of care and emotional support they received. The process had a significant impact on the parent–child relationship and the relationship between the family and healthcare professionals.” Delivering this news is “challenging for some healthcare professionals due to lack of training” (Mugweni, et al, 2021).
The National CMV Foundation states, “Hearing problems occur in up to 75% of babies with symptomatic congenital CMV... the hearing loss will progress throughout the course of their lives.” In addition, “approximately 10-15% of asymptomatic babies may experience hearing loss, which can occur at birth or later in life.” Regarding vision, “Vision problems or loss may occur in 10-20% percent of children with symptomatic congenital CMV. The types of vision abnormalities are diverse and include scars on the retina and eye muscle tissues. Cortical vision impairment (CVI) or cortical blindness, where the brain improperly translates signals from an otherwise healthy eye, causing permanent visual deficiency, may also occur.” In addition, “Minor vision loss may occur in one to two percent (1-2%) of asymptomatic babies, usually caused by small scars or abnormal pigment layers on the retina that may be present at birth, or may occur later during childhood.”
Andrew Handel, MD, a Pediatric Infectious Disease physician at Stony Brook Children's Hospital, said, "Disclosing a new diagnosis of congenital CMV can be difficult in many ways. The conversation entails delivering some upsetting news, but also being very clear about the optimism and hope for the future. Most parents have never heard of CMV, so processing a complex and uncertain diagnosis can be challenging. There's so much we medical providers don't know about cCMV, that it can be difficult to provide accurate, meaningful information. As a result, the medical community has a long track record of minimizing the conversation or avoiding it altogether. Thankfully, due in large part to the work of parent advocates, there's growing momentum toward national cCMV awareness among providers and the general public. These conversations will always be difficult, but meeting families with compassion, humility, and a commitment to ongoing communication goes a long way. Feedback from families who have lived through these experiences is invaluable toward improving these conversations. " (Dr. Handel is Primary Investigator, with Sharon Nachman MD, of PROACTIVE NYS, an NIH-funded long-term follow-up study of young children with congenital CMV: www.proactivenys.org, andrew.handel@stonybrookmedicine.edu).
In my new memoir, "Had I Known about CMV: From Shock to Law," I decided to reveal my true thoughts after I received Elizabeth’s diagnosis and her predicted future. At the time, I didn’t tell my family and friends that I wished I were dead and of the various ways I told God He could kill me so it would look like an accident. When He didn't kill me, I prayed He would help me love Elizabeth – and that He did – in abundance. At first, I felt nervous sharing such personal thoughts with the world, but when I began hearing from mothers about their experience receiving the news that their child might be DeafBlind, I was glad I did.
One mom, who gave me permission to share her story told me that she was so exhausted caring for her newborn and overwhelmed by a new diagnosis her daughter received when she was eight months old, that she bought two bottles of sleeping pills and a bottle of wine and drove to a parking lot to end her life. She was saved because her husband kept calling her and leaving messages, asking her to come home and help him take care of their daughter. Initially, that was the only thing that kept me going, too – knowing that my kids needed me to take care of them. Most of us moms don't share our struggles with those closest to us because we don't want to worry those around us. We may not want them to know we’re drowning or that we feel guilty for passing something harmful onto our children.
The unconditional love I grew to feel for Elizabeth was so powerful and fulfilling that I can't imagine who I would be today if I didn’t have the chance to raise her for 16 years. Although the doctor who gave me her initial prognosis was right, she never did "rollover, sit up, or feed herself,” and she was considered “deaf-blind,” he failed to predict that for several years in a row, Elizabeth would receive the "best smiling" award at school – making me so proud when I hung her certificates on our refrigerator.
Although the mom who attempted suicide is fine now and lovingly raising her daughter, her story prompted me to ask moms how they received the congenital CMV news and what helped, hurt, or could have been done better. Although congenital CMV is a leading cause of birth defects, most moms have never heard of it until our baby gets the diagnosis. One mom said that when she got the diagnosis, she thought her daughter had something like the flu – something she’d recover from. She said it took several compassionate nurses to help her realize that her daughter could be normal – or she could be nonverbal, blind, deaf, unable to walk or move. She said, "A lot of questions stemmed from family members when they Googled it. They thought I had been promiscuous or had done IV drugs. I got blamed by my family and her dad’s family for contracting CMV."
I hope my story, and the stories that follow, will help the medical community learn how to better deliver a distressing diagnosis to a mother. For example, it’s important to remind the mother that her child is not a tragedy – but a lovely little person whose life still has purpose and meaning. In Part 2 of this article series, I will share perspective from the National CMV Foundation, resources for parents, direct quotes from families from our Facebook group and more! Stay tuned for the next edition!
In the meantime, for more information about congenital CMV and deafblindness, contact the New York DeafBlind Collaborative (NYDBC) at nydeafblind@gmail.com. For specifics on statistics, Susanne Morrow, NYDBC Project Director, suggests checking the national statistics from the annual Child Count. This is a summary of all children registered with the federally funded State DeafBlind Projects. The most recent report from 2022 is available on the National Center on DeafBlindness website: Primary Identified Etiology | 2022 National Deafblind Child Count Report.
Lisa Saunders
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PART 2
National CMV Foundation Program Director, Amanda Devereaux RN, BSN, herself the mother of a child with congenital CMV, said, “This can be a hard diagnosis to live with. There is uncertainty, fear, anger, and regret. For most people it does get easier. You will learn to love your child exactly as they are, and you will learn that although your parenting journey is different than most, it is no less valuable or joyful. You are doing exactly what every parent should do – parent your individual child, exactly as they are, and not how you expected them to be. I think it is important to focus on the short term, at least at the beginning. I would ask myself, ‘What can I do for my child today?’ I would not allow my thoughts to drift too far into the future. It took time, practice, and counseling to be able to focus on the short term. Over time, I have been able to extend how far I can look into the future without feeling overwhelmed. You will get there. It just takes time.”
The National CMV Foundation has a very simple, but comforting flier for parents: “CONGENITAL CMV: SUPPORT AND NEXT STEPS, which includes testimonies from parents, such as Jami, who said, "It's OK to be broken and cry, and ask ‘why us?’ But at the end of the day your baby is perfect. Finding support from families similar to mine helped me remember that my child is perfect…” The National CMV Foundation hosts “Care to Talk,” a recurring, online support group for families that discusses life “before, during, and beyond congenital CMV.” If you would like to try the Foundation’s “Care to Talk”, pre-registration is required. For questions and/or to pre-register, please contact Amanda Devereaux at: amanda.devereaux@nationalcmv.org.
Several moms I polled through a CMV Facebook group have offered to share their experiences to help the medical community learn how to deliver an upsetting diagnosis:
"The doctor should make sure to point out how amazing her baby is and how lucky the baby is to have a wonderful mom. I think that will help focus back on the miracle of her child's life and show love to the baby and her mom. Knowing the doctors valued my daughter and were compassionate to her was comforting and very helpful."
"I think it's really important that doctors realize their words will stay with that mother forever. It may just be a normal day at work for them, but for us, it’s a moment that changed our whole lives. It's important to give clear, accurate information on cCMV, and though, yes, you may have to touch on the worst-case scenarios, statistics also say most children will have mild effects."
“We were very lucky. [The neurologist] didn't guess what our newborn would or wouldn't be able to do. He told us she was beautiful and what to watch for. He was her neurologist for years and was always a kind and steady influence in our lives until she was in her teens and he retired. I've always known we were blessed to have him.”
"My OB prayed for me. My fetal maternal specialist was hopeful with each appointment. He was amazing. His partner was just not, but that was just her direct personality."
"We did have some incredibly compassionate nurses and doctors that handled things really well. One doctor sat me down and told me repeatedly this wasn’t my fault. I’ve always appreciated her."
"I got a phone call from the infectious disease nurse who I didn't know, and it was terrible. I would say call people into their family doctor’s office (somewhere familiar) and maybe have the infectious disease nurse talk over the phone there.”
"I was on my own, husband at work, baby five days old, in NICU. I was told: ‘If your baby survives she will be deaf, blind, brain dead, in a wheelchair, like a cabbage.’ After that, I never heard another word.”
“I think doctors are too quick to only give the clinical list of things that are wrong and fail to tell the good sides. Even when giving horrible news, you can share that there will still be joy. My severely affected son was predicted to be 'blind, deaf, and retarded' by one NICU doctor and 'a vegetable' by another. While the first set of predictions were technically true, my son was still a happy, joyful child. He laughed and smiled constantly, loved to swim, listen to music, sing, kick, snuggle, play with rattles, and he even enjoyed riding roller coasters at Disney. Yes, he had a lot of daily medical needs. Yes, he faced life or death medical situations annually and passed away at age six. But his life was still valuable and worth living. Finally, all medical providers need to know that CMV is extremely common in children, and they are not putting themselves at unusual risk if they treat our children."
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One mom said the poem, “Welcome to Holland,'' written by the mother of a child with Down syndrome, Emily Perl Kingsley, was very helpful. My friend, singer/songwriter Debra Lynn Alt, wrote a song to help us mothers put words and music to our feelings. She titled it, "Had I Known (about CMV)," and I listen to it often. Parents may also benefit from reading articles such as,”How to Cope When Your Unborn Baby is Diagnosed with a Birth Defect” (Children’s Hospital of Philadelphia, 2019). Parents can also contact the National Congenital CMV Disease Research Clinic and Registry, spearheaded by 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. Known affectionately as Dr. Gail by her CMV patients and their families, she has over 40 years of experience in congenital CMV.
When Dr. Gail was interviewed for a webinar hosted by The American College of Obstetricians and Gynecologists on presenting the diagnosis of congenital CMV to a family, she said, “First, I begin with, they’re not alone. My families think they are the only ones on the planet with a baby with congenital CMV because they’ve never heard about it. So, I explain that CMV is actually a very common virus. Most people will be infected with it. It’s usually silent – that’s why they don’t know about it…most babies who are congenitally infected with CMV will actually have little or no symptoms." Dr. Gail says the first few months are the hardest “because they often need to do evaluations, blood tests, imaging tests, hearing tests, eye exam, consultations...all during a time when they’re processing this news about their baby and also exhausted from being new parents. So, I reassure them that ... the first few months are the hardest and it does get better as their baby grows” (Compassionate Conversations: Congenital Cytomegalovirus, June 14, 2024).
“Moms with children less affected by congenital CMV shouldn't be any less important than those whose children show signs of cCMV at birth,” said Kara Russell, New York National CMV Alliance Co-Chair. “As a mother who did not find out her daughter had congenital CMV until she was five years old, we are considered ‘lucky.’...I felt completely dismissed by everyone we saw, and was repeatedly told, ‘Well, it could be worse. Be thankful it's only her hearing.’ It was as if we should be grateful, that we didn't have the right to be angry or to grieve the loss of her hearing, that it didn't matter that she was struggling in school, has balance issues that cause injury, has behavioral issues, will be undergoing CI surgery, and that the rest of her life has been altered by something we were so completely unaware of.”
In my memoir, “Had I Known about CMV: From Shock to Law,” I share how several strangers comforted or inspired me and how I learned to deal with the shock of Elizabeth’s profound brain damage by journaling, searching the Bible for relevant Scriptures, and by taking anti-anxiety medication. 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 diagnosis and prognosis. Although I always prayed for a miracle, I also learned to just concentrate on caring for Elizabeth one day at a time, just as her nurses suggested before we brought her home from the hospital: “don’t worry about tomorrow, for tomorrow will bring its own worries” (Matthew 6:34). You can read my initial thoughts and how I began recovering from them in the “read sample” portion of the ebook or paperback version.
Although Elizabeth died in 2006 at the age of 16 during a seizure, I feel like she is still with me. She is my "Tiny Tim" who would say if she could, "And God bless us, everyone!"
For more information about congenital CMV and deaf-blindness, Susanne Morrow, Project Director, New York Deaf-Blind Collaborative, suggests checking the statistics from the National Center on DeafBlindness. She said, “This is the national child count that we report our data to every year” (click on “Primary Identified Etiology | 2022 National Deafblind Child Count Report”).
About Lisa Saunders
Lisa Saunders was the mother of Elizabeth, born with a severely damaged brain from congenital CMV in 1989. Although Lisa was a licensed, in-home childcare provider, a church nursery volunteer and the mother of a toddler, she was unaware her activities put her at increased risk for CMV. Lisa helped pass CMV legislation in both Connecticut and New York and was the recipient of the National CMV Foundation Spirit of Advocacy Award in 2023. Lisa is currently walking 360 miles across the State of New York between Albany and Buffalo with her husband, Jim, leaving behind Stop CMV rocks to help raise awareness. She is a PAC-B TV talk show host and is on the Advisory Board, as a Parent Advocate, of PROACTIVE NYS, the follow-up study of New York infants with congenital CMV, and is a member of the New York DeafBlind Collaborative, Expert Advisory Council.
