Book review: A tenacious Alaska mom takes on a little-known disease and the medical establishment

“Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother’s Pursuit of the Truth”

By Megan Nix; Doubleday, 2023; 336 pages; $28.00.

When Megan Nix delivered her second child, in 2015, the baby was small and failed her newborn hearing test. Nix and her husband soon learned about a virus known as cytomegalovirus, or CMV, that Nix had been infected with while pregnant. Why had she never heard of such a thing? Why had her doctor never mentioned it? Was it very rare?

Nix set off on a quest to learn everything she could about CMV. She was shocked, as readers should be, at just how common it is, how devastating the congenital form is for affected children and their families, and, especially, that the medical community did not, at the time, advise pregnant women about the virus and what they should do to avoid it. Moreover, infants were not routinely tested for it, which meant that most cases went undetected and antiviral treatments and other interventions weren’t made available.

The numbers are indeed shocking. Congenital CMV — that is, the viral disease transmitted to infants before birth — is the leading cause of birth defects and developmental delays in the United States. Approximately one out of every 200 babies is born with it, and about a fifth of those will face lifelong disabilities. A baby may look normal but exhibit progressive symptoms over time. Some of those symptoms are deafness, blindness, cerebral palsy, developmental delays, epilepsy, lung disease and autism.

Nix, who splits her time between Colorado and Alaska, was a tiger for her daughter’s needs. At a critical time, she arranged for antivirals to be flown to Sitka by small plane. She traveled to Seattle for various tests. She enlisted the help of every available medical service and provider, every therapy. She spent hours on the phone arguing with insurance company representatives. The family learned sign language and chose to outfit the tiny girl with cochlear implants, which use electrical current to bypass the ear and transfer sound information to the brain.

But she did far more than that. She read every scientific report related to CMV, from everywhere in the world. She interviewed and confronted doctors. She contacted, met and befriended other CMV mothers and their children. She lobbied state legislatures. And she wrote, first in newspaper articles and opinions, eventually in this full-length, personal, well-researched and important book. Today, she continues her advocacy, giving presentations to health professionals and hospitals and speaking at medical conferences.

The book’s subtitle may be a bit of overstatement, as though a medical conspiracy was responsible for keeping a secret. In fact, as Nix learned, medical schools did not teach about CMV and the organization that sets standard practices, the American College of Obstetricians and Gynecologists, didn’t recommend warning women about it. The medical establishment, seemingly uninformed, considered congenital CMV “rare” and, as her own doctor told her, “Women won’t want to worry about one more thing.”

Such lack of knowledge or concern infuriated Nix, since effective prevention measures — if pregnant women were only informed — involve hygiene like hand-washing, as the virus is spread through body fluids and is very often present without symptoms in young children. Nix assumes she caught the virus from her toddler daughter. Routine testing of newborns, as is done for so many other conditions, would allow interventions and therapies to begin immediately. Testing of a fetus can also identify congenital CMV and give parents the option of terminating a pregnancy.

For all its medical information and alarm call to parents and health professionals, the great strength and beauty of “Remedies for Sorrow” lies with Nix’s superb writing and the context she brings to her story. A graduate of the University of Alaska Anchorage’s MFA program, Nix is a tremendous narrative writer, infusing every page with story, never losing a reader in a thicket of data, facts or jargon. A reader need have no particular interest in motherhood, babies, disease or the medical system to fully engage with the story she tells. Her family, religious views, attachments to place, friendships, historic events and responses to some of the world’s great thinkers and writers fill this book with radical thought and appreciation for life.

Here’s the author, the night after she’s learned of her baby’s diagnosis: “Much later, after the haze of shock and sorrow have bled into night, I’m in bed. There’s the velvet brown of our bedspread, the crackle of Luke snoring, the warmth of Anna’s breath as her body fights and rests. In the last dregs of light, around midnight, I can still see the long shadows of Anna’s already long eyelashes, and I run my index finger along them, watching them bend and return, like the pliable but unbreaking tines of a comb. In my body is an all-consuming love and an obliterating agony ...”

Nix took her title, “Remedies for Sorrow,” from the teachings of St. Thomas Aquinas and labels her five sections with his advice — Weeping, Contemplation, Company, Pleasure and Caretaking. When the narrative ends, Anna is 7, in a mainstream classroom, singing; she is a precious and, indeed, extraordinary child. Nix follows with an epilogue that spells out the latest progress in recognizing, educating, testing and treating congenital CMV, that this serious childhood disease may now be, as much as possible, prevented and treated.

[New collection brings popular Alaska podcast ‘Dark Winter Nights’ to the page]

[A memoir brings to life Southeast Alaska’s island wilderness, tested by one restless heart]