An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth
March 1, 2023
An investigation of a dangerous virus that can threaten developing fetuses. When Nix's second child, Anna, was born, she had low birth weight and failed a hearing assessment given to all newborns. After failing subsequent tests as well, Anna was diagnosed as profoundly deaf--a consequence, Nix was told, of having contracted cytomegalovirus in utero. Often spread to pregnant women by toddlers' runny noses and sneezes, CMV is easily preventable through simple hygienic measures, such as handwashing and avoiding finishing a child's leftovers or kissing on the lips. But Nix, whose first child was a toddler during her pregnancy with Anna, had never heard of CMV. It was not screened by genetic tests routinely offered to pregnant women, nor by the blood test given to newborns to detect a battery of diseases and disorders, even though it is the leading cause of birth defects and developmental delays in the U.S. Fetuses who contract CMV during the first trimester, especially, are at risk of stillbirth, blindness, deafness, seizures, cerebral palsy, cognitive and motor delays, and autism, among other disabilities. In her moving debut memoir, Nix recounts the heartbreaking diagnosis that thrust the family into the world of the disabled--a world, she admits, which she always had thought existed "in the anecdotes of others." Because administering an antiviral to a newborn in the first month is crucial, Nix embarked on a desperate effort to procure the medicine for Anna in Sitka, Alaska, where the family lives for nearly half of every year (her husband is a salmon fisherman). There, and in their home in Colorado, Nix accessed a range of interventions to help Anna thrive, connected with a community of CMV moms for much-needed support, and transformed herself into a brave activist. In sharing the fears, frustrations, and challenges she has faced, the author lays bare both insidious medical paternalism and the dismal failure of public health policy. An inspiring memoir with an urgent message.
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Starred review from March 15, 2023
When Nix had her second child, she felt something was off. She was correct: as a fetus, her daughter, Anna, had been exposed to CMV, a condition that can result in deafness, blindness, delayed development, physical and neurological complications, and even premature death. Nix learned that CMV is a common virus that stays in people's systems forever. Spread by direct contact with an infected person's body fluids, the virus is most commonly carried and transmitted by toddlers. Nix couldn't believe she had never heard any of this, and was outraged to learn that most medical practitioners rarely bring it up to their pregnant patients. In this engaging and informative account, Nix shares her family's experiences: spending three months of every year in Alaska as her husband fishes for salmon, balancing Anna's needs with those of other family members. She also recounts the initial, crippling isolation she felt, the eventual joy of connecting with other moms of CMV-exposed kids, and her increasing CMV-awareness activism. Nix is honest and forthcoming, an engaging writer with a gift for description. CMV is just beginning to get the attention it deserves from the medical world, and this timely and insightful account will help raise awareness.
COPYRIGHT(2023) Booklist, ALL RIGHTS RESERVED.