A mother’s loving memoir about a mysterious virus

In the spring, my daughter Georgia gave birth to a beautiful eight-pound baby girl named Enid. While still in hospital, tests were run following up on abnormalities seen on in-utero ultrasounds. We, Enid’s family, were bewildered when she was diagnosed with congenital Cytomegalovirus (CMV). We had never heard of it. “Don’t google it,” the pediatrician warned, “and prepare to become very familiar with the medical system.”

No obstetrician had mentioned CMV, there had been no handouts from the doctor, no waiting room posters. But suddenly we were hit with the possible repercussions of CMV contracted in utero congenital CMV – hearing loss, vision loss, seizures, low birth weight, cerebral palsy and other maladies.

Remedies for Sorrow, written by the mother of a child born with CMV, was published just over a week after Enid’s birth. Georgia discovered it on an online forum for families affected by the diagnosis. I know the book was not written for us, but I cannot imagine facing the diagnosis without it. The emotions Megan Nix describes – anger, guilt, confusion, fear – at the CMV diagnosis of her second daughter, Anna, arose in us as well. By telling her story, she gave us words. And she did her homework. CMV is, as she describes and lays out the case for, “one of the most dangerous – but overlooked – diseases in the world.”

This disease, we learn, is extremely common, can look much like the common cold, and is not particularly dangerous, except for those who are immunocompromised or in utero –the virus crossing the placental barrier. Toddlers are particularly generous sharers; in daycare settings, up to 60 percent of preschoolers have been found to excrete the CMV virus. Both Nix and Georgia had toddlers.

Congenital CMV is not rare. CMVCanada states that “1 in 200 Canadian infants are infected with CMV during pregnancy” and “1 in 5 children infected with CMV during pregnancy will have a permanent disability such as hearing loss or developmental delay.”

At birth, Nix’s daughter Anna is small, five pounds, and fails the mandatory hospital hearing test – as Enid did. Though based in Colorado, Nix and her family spend the commercial fishing season in Sitka, Alaska – accessible only by air and sea. By the time of Anna’s diagnosis, the family has landed in the remote setting for the summer and embarks on the heart-stopping task of getting critical antiviral medicine, medical care and therapies. While living in Alaska is frustrating, Sitka also provides beauty and space, along with community, giving Nix and her family solace and refuge.

Anna is eventually tested by an audiologist using the auditory brainstem response (ABR) test, measuring brain wave activity in response to sound. The audiologist tells Nix there is no response at all; Anna is deaf. She does not mention that CMV causes more hearing loss and deafness in children than any other nongenetic cause.

Nix wonders – as does my daughter – why she was warned of risks such as raw fish and alcohol but not “of the risk I loved most – the one who ate my food, followed me around and sneezed into my mouth.” Why had no obstetrician recommended something as simple as the “universal precautions” of good hygiene to avoid transmitting fluids: washing hands, not sharing a toddler’s utensils or food, not kissing on the mouth.

Nix pores over the internet for CMV information and connects with physicians and affected families. Her gift to us – and to any reader, especially anyone navigating disability – is returning to her calling as a writer. Gathering up research and her experience with Anna, she shapes a beautifully written and informative memoir.

The book is framed with thirteenth-century monk Thomas Aquinas’s remedies for sorrow: weeping, contemplation, company, pleasure and caretaking – remedies that sound surprisingly modern. A member of the Russian Orthodox Church, Nix is able to rest in the security of believing “that our children are born a specific way not by chance but because they are part of a more complete, incomprehensible picture, just as they are.” She quotes Psalm 139, “I praise you because I am fearfully and wonderfully made.” This does not lead to a passive acceptance of Anna’s condition. For Nix, the paradox is being deeply grieved by the challenges Anna must endure – “the cross that CMV is” – and working in every way she can to prevent it, but also loving her child, and in a complicated way, loving her “because of CMV, not in spite of it.”

Nix’s compassion and intelligence make this book interesting as a memoir and as a medical history. The story of a mother challenging established medical practice to bring the truth of a devastating disease to light is relevant to many readers, especially those in healthcare or contemplating pregnancy. Her story informs practitioners and pregnant women of actions that can be taken to mitigate the possibility of congenital CMV – not to bring fear, but to bring agency.

My granddaughter Enid’s future is uncertain. She has significant hearing loss. Further complications are possible. We don’t know, but we echo Nix, “All Anna’s doctors have told us that she will likely be late to do everything and that we should prepare ourselves for the type of patience and altered timeline this requires. But they haven’t said anything about the light speed of love – how it won’t take any longer for us to love Anna or for Anna to love us.”

At the time of writing this, Enid is five weeks old, and I think I have just seen the flicker of a smile. We do not know what will come, but we are held – and we hold her – with love. Thank you, Megan Nix, for giving us the words to describe it.