Anna, Megan Nix’s second child, was born underweight and silent.
Despite reassurances from medical professionals, Nix said she knew something was amiss. The Wheat Ridge author set on a multi-year journey to uncover a medical mystery that, she would learn, should have been no mystery at all.
Congenital cytomegalovirus is caused after a baby is infected with the cytomegalovirus (CMV) while in the womb. This happens when a pregnant woman contracts CMV, which is a fairly common virus.
Congenital CMV impacts about one in every 200 babies. Of those, about one in five will have birth defects or long-term health problems, according to numbers from the Centers for Disease Control.
“To give perspective on that, women across the board know about toxoplasmosis, which is the disease that is caused by kitty litter,” Nix said. “So toxoplasmosis affects one in 10,000 babies. CMV is one in 200, but it appears nowhere in prenatal literature, in doctors' discussions with pregnant women.”
Nix’s new book, “Remedies for Sorrow,” explores not only her journey with her own daughter, but also why American medicine has not prioritized CMV the same way it has for other, less prevalent prenatal concerns.
Dr. Ted Maynard, a board member of the Colorado chapter of the American Academy of Pediatrics, says Nix is right to say that the awareness of CMV is out of balance with its prevalence.
“Congenital CMV is the most common congenital infection in the United States and in the entire world, and far more common than almost anything else that we think about as a risk during pregnancy,” he said. “People worry also about Zika virus, which causes similar problems as CMV — damage to the brain, seizures, cerebral palsy, hearing loss. But, CMV is far, far more common than Zika because it's everywhere, all over the world. And Zika's only in the tropics where there's mosquitoes.”
Nix heard nothing about CMV, or ways to avoid it, during her pregnancy. For her book, she spoke to experts across the country and lobbied the Colorado Legislature to update newborn screening policies. She’s also advocated for better information on preventative measures for pregnant women so that they know to look out for the virus.
However, Nix’s experience caring for her daughter also led her to question the fundamental structures of medical care. American health care, but obstetrics in particular, are rife with paternalism and an emphasis on efficiency that undermines care, Nix said. She’s become an advocate for an area of care called “narrative medicine.”
“Basically the premise is that a doctor slows down. Instead of starting with the chief complaint of the patient, they start with, ‘Tell me your story.’ And while the pushback, of course, would be that doctors don't have time for this sort of thing, the benefit is actually to the doctor and the patient,” Nix said. “It creates a bond of trust and it creates appointments that aren't rushed where the patient starts to lose hope in themselves and in the doctor. And there's a number of doctors who have said that the rewards are much greater than the time cost of spending more time with each patient.”
That practice of narrative medicine runs contrary to what Nix said she found across a lot of care, particularly for expecting mothers.
In interviews with doctors, including a specialist at the Texas Children’s Hospital named Dr. Gail Demmler-Harrison, Nix said some providers default to thinking that too much information can overly-burden mothers.
“This is doctors believing that they will worry women too much,” Nix said.
Maynard agrees that medicine has skewed paternalistic throughout its history. He says there are people in the field working to improve on that as well as CMV awareness. For parents, Maynard advises mothers who already have young children or who work in childcare to be hygiene conscious, as young children are a primary source of CMV.
“We know that when people study the children in daycare centers — and especially large daycare centers with more than 10 children — that about a third of all those children will be shedding live CMV virus in their urine or in their saliva at any given time,” Maynard said. “So, women working with young children should be aware that there's always a chance they have CMV and they should be washing their hands carefully after changing diapers. They should not share utensils. Don't lick that spoon that you just had in the baby's mouth. And the recommendation is to not kiss your toddler on the lips, but kiss them on the top of their head instead.”
Maynard adds that parents should request a CMV test if their baby fails their newborn screening test.
