How Doctors Can Support a Mom Whose Child is Diagnosed with Congenital CMV

How Doctors Can Support a Mom Whose Child is Diagnosed with Congenital CMV

Author: Lisa Saunders

 
When my daughter Elizabeth was born in 1989, my immediate thought was, “Her head looks so small...so deformed.” The OB/GYN said matter-of-factly, “Your baby's head is small, she will have to be evaluated in the morning.”
 
The next day, I learned she had congenital cytomegalovirus (CMV). A neonatologist said I had contracted CMV and passed it on to Elizabeth while she was developing in my womb.  He said, “Elizabeth has profound microcephaly – her brain is extremely small and damaged throughout. It doesn’t even fill her small skull cavity. 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 even know if she can see or hear.” Before leaving the room, he said, “Of all the cases I've seen, Elizabeth's is the worst.”
 
That was 35 years ago, launching a journey that I’m still traveling – even though my darling daughter died 18 years ago. In my new memoir, "Had I Known about CMV: From Shock to Law," I decided to reveal my wish to be dead after I received Elizabeth’s diagnosis and her predicted future. At the time, I didn’t tell my family and friends how I was really feeling and 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 information with the world, but when I began hearing from mothers about their experiences receiving a congenital CMV diagnosis, 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 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 them. We may not want them to know we’re drowning or that we feel guilty for contracting CMV – even though most of us never heard of the precautions to take around the bodily fluids of the toddlers in our care.
 
I hope my story, and the stories that follow, will help the medical community learn how to better deliver a congenital CMV diagnosis to a mother. For example, it’s important to remind the mother that contracting CMV was not her fault, and that her child is not a tragedy – but a lovely little person whose life still has purpose and meaning.
 
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,” he failed to predict that for several years in a row, Elizabeth would receive the "best smiling" award at school – making me so proud to hang her certificates on our refrigerator.
 
It was Elizabeth’s smile that keeps me smiling to this day.
 
The first year is usually the hardest on mothers.  One study showed that 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 was “challenging for some healthcare professionals due to lack of training” (Improving the way healthcare professionals deliver different news to families during pregnancy or at birth: a qualitative study,” Mugweni, et al, 2021). 
 
Although the mom who attempted suicide is fine now and joyfully 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 the leading viral cause of birth defects, most of us moms never hear 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."
 
Another mom, whose newborn failed the hearing screen, was reassured it wouldn’t be congenital CMV, and was told that whatever she did, “don’t Google it” (but of course she did). She said, "I remember the tears coming down my face as I saw the pediatric doctor walk in after just doing her rounds. She pulled up a chair to deliver the news. I was devastated.  What was going to happen from here? What would her life look like, would she be made fun of, would she attend a regular school, how 'different' would she be? How did this happen? I wanted to find someone to blame: the little kid I watched while pregnant for maybe infecting my child who passed it on to me, or my husband, or anyone but myself. I felt I failed."
 
The article, “The Psychosocial Impact of Congenital Cytomegalovirus on Caregivers and Families,” states: “parents of children with cCMV may experience a lack of sufficient social supports, isolation, and emotional strain of the ‘ups and downs’ associated with the unpredictability of the disease…persistent maternal self-blame and shame for their child’s congenital condition, even if they were unaware of the potential effects of their actions during pregnancy on fetal development…”(Zappas, Devereaux and Pesch, 2023). One of the authors, all medical professionals who have a child with congenital CMV, stated later on Instagram, "The guilt of CMV can come in waves, so do the ‘what ifs’ and the ‘if only I hads’. But the truth is, you probably weren’t told about CMV. You carried that baby with love and reverence, you did everything you knew you could do to protect her. So many of us carry this shame, but I'm here to tell you, you are not at fault, you are not to blame" (Megan Pesch, MD, MS, Assistant Professor, Division of Developmental and Behavioral Pediatrics, University of Michigan/Michigan Medicine).
 
Several moms I polled through the CMV Mommies Facebook group have offered to share their experiences and/or advice with the medical community to help them learn how to deliver the congenital CMV diagnosis:
 

• "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. There was a neurologist at our children's hospital that had been studying CMV for 20 something years. He saw the signs, ordered the urinalysis and delivered the news. But he 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.”  
• "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."           
• "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." 
• "I would have appreciated more than a single printed sheet with information they pulled from the internet. 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 think more doctors need information on this because a lot of doctors that my daughter was referred to didn't understand, or they reacted harshly towards my daughter."         
• "Our OB/GYN shrugged his shoulders and acted as though it was just a typical day, and said, 'she might have hearing loss.'  It was very insensitive and a gross oversimplification. Several months later at my postpartum check-up, he said 'Oh, she's deaf, they'll put some CIs [cochlear implants] on her and she'll be fine.' OBs should also educate themselves on the complexities of cCMV. A year later, I went back and paid a copay just to have a conversation with him about cCMV and the struggles my daughter was facing at the time: hypotonia, global developmental delay, bilateral deafness, etc. He said, "Well, there's nothing we can do about CMV," which is false. The entire OB community needs to reassess how they oversimplify and downplay the effects of CMV, not just on the child but the whole family as well. I never went back to that office." 
• "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.”           
• "Blunt, factual information was exactly what I needed when it came from someone who knew what they were talking about. Our neurologist was great that way."           
• "Honestly, if they would give the info and acknowledge that 'Dr. Google' can be overwhelming, it may help the family prepare for all of the diagnosis potentials and spectrum of affect they will see on the Internet. Obviously, being willing to answer questions AND look the family in the eye when giving the diagnosis is very important."           
• "The doctor from the hospital who gave us the news was very kind and apologetic, but didn’t give us any information on it, and even after being told not  to Google, that was our only choice to learn anything. I would’ve loved to have been handed a list of testing my daughter would have done and some info about the virus in a pamphlet at least. The only reason I knew the extent of testing my daughter would have was because I joined the 'CMV Mommies' Facebook group. Her pediatrician wasn’t even concerned and didn’t even want to refer her to infectious disease. That is not acceptable from doctors! Every child with cCMV needs the same work-up in my opinion. It took a lot of fighting to get him to refer her to get any of the testing she needed. "           
• "My doctor never even called us. We called the lab and they told me he was positive and I had to follow up with my doctor. My son’s appointment wasn’t for four days. I had to sit and let Google tell me about CMV. Then when I saw his doctor, he told me that it was okay and that he would probably be part of the 90% that was fine. My son is definitely not part of that 90%, unfortunately. These doctors are not properly educated. If you treat children, especially newborns, there is no reason you shouldn’t be 100% fully educated on CMV. I think that has a lot to do with why they don’t take telling people with more heart. Because to them, it’s nothing, but to us, it’s everything." 
• "My experience of negativity stems from the social worker who came in after the diagnosis while my toddler daughter and husband were visiting. She observed us interacting for a few minutes, and one of the first things she said to us was ‘your daughter will no longer be the princess of the house for sure.’ Everything she said afterwards we didn’t hear because of her condescending voice. Education, compassion and timing are essential ingredients that should be used presenting this info to the parents."           
• "We were tested several times while in the hospital and they all came back negative. Then when our ENT sent us for a TORCH panel, it came back positive, and I found out through MyChart and then had to deal with it on my own."           
• "I just wish more medical professionals were educated on CMV and the risks to unborn babies. In the beginning, nobody really took the time to explain things to us. We felt in the dark about so many things and had to push for all of the necessary testing because they believed her to be minimally affected. They were wrong about that, and I feel as though that set us back. I want doctors to be super proactive in getting parents and cCMV kiddos all of the testing and support they need instead of brushing off parents' concerns. It’s a terrifying experience being told your baby is sick and then being made to feel like your concerns aren’t valid." 
• “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." 
• One mom had a very specific list of advice for the medical community:
  • 1) Allow parents to attempt to be optimistic and positive about something so scary and gut wrenching.
  • 2) Be supportive by not continuously suggesting termination of pregnancy after parents have said that that was not an option for them and wouldn’t even be considered. 
  • 3) Take the time to LISTEN and try to empathize with the parents. Even if you don’t have any words. It goes a LONG way.
  • 4) Ask parents what they would like the outcome of their case to be and try your hardest to give them that. But also lovingly make them aware that nothing is guaranteed.
  • 5) Be open to learning and growing as a doctor/ human being in such unpredictable circumstances, and in the health field as a whole. Do your own research. Dig. Find ways to further your education if at all possible.
  • 6) A general CMV informational pamphlet at my very first prenatal appointment would’ve been nice. You bet I got all the Down syndrome, fetal alcohol syndrome, spina bifida pamphlets, but none of those things are what killed my son. Baffles me how 'common' CMV is, yet no one knows about it.
•  “Moms with children less affected by congenital CMV shouldn't be any less important than those whose children show signs of cCMV at birth. As a mother who did not find out her daughter had congenital CMV until she was five years old, we are considered ‘lucky.’ However, when the ENT said she was going to pull Lyla's newborn blood spot to test for cCMV, she said it in such a blase manner that I honestly didn't think anything of it. Then, the doctor didn't even have the decency to call me with the results. I saw them come through on MyChart with a note that encouraged me not to Google it. Of course, I googled and what I found terrified me. Especially when a slew of tests followed as well as doctor appointments. 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, that she 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. The medical community made us feel guilty for feeling those things, and all I wanted to do was scream and say, ‘What if this was your child? Would you still feel the same?’ Maybe I don't have the right to go in waves of depression and anger. I am constantly justifying myself to people, even friends, when they say, ‘Wow, you're really investing a lot of time in this CMV stuff. At least it's just her hearing.’ The phrase, ‘Well at least…,’ can be hurtful and feels dismissive. Because trust me, moms whose children are less affected are grateful and we do understand, but we don't need someone to tell us that. We need to be allowed to feel our feelings and be met with kindness and understanding just as anyone else.”  

 
Now that patients are being routinely asked mental health questions at their doctor's visits. Hopefully, moms will grab that chance to be honest if they are struggling. One way my OB/GYN helped me after Elizabeth was born was when I called her to say I was having trouble functioning, feeling like I couldn’t catch my breath at times. The doctor believed I was having anxiety attacks and prescribed a temporary anti-anxiety medicine. Those pills were one aid to helping me learn to accept Elizabeth's disabilities and move forward. When I sensed an anxiety attack coming on, I would take a pill and calm down enough to ask myself, "If Elizabeth doesn't care that she has profound brain damage, why should I be so upset? If she never walks and ends up in a wheelchair, that’s how most of us end up anyway–she’ll just do it sooner."
 
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). 
 
A basic flyer that may be helpful to the medical community was created by the CDC: Talking with Pregnant Patients About CMV: A Resource for Healthcare Providers.
 
The National CMV Foundation has a very simple, but comforting flyer 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…”
 
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 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.
 
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 interviewed for a webinar hosted by the American College of Gynecology on presenting the diagnosis of congenital CMV to a family, Dr. Gail 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).
 
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 the occasional 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 bringing her home from the hospital  - “don’t worry about tomorrow, for tomorrow will bring its own worries” (Matthew 6:34). You can easily see my initial thoughts in the “read sample” portion of the ebook or paperback version, and how I began recovering from them. 

Although Elizabeth died in 2006 at the age of 16, I feel like she is still with me. She is my "Tiny Tim" who would say if she could, "And God bless us, everyone!"
 
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 of CMV and her increased risk. Lisa helped pass CMV legislation in both Connecticut and New York. She 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.