Megan Nix’s second daughter, Anna, was born in 2015 after a seemingly uneventful pregnancy. The baby was very small and failed her newborn hearing tests.
When Anna’s pediatrician said he wanted to test her for something called congenital CMV, Nix was taken aback.
She had never heard of it.
She was stunned to find out that CMV — or cytomegalovirus — was a common virus, highly contagious and found in the saliva of one in three toddlers.
If you catch it as a pregnant woman and it crosses the placenta, it could pose serious problems for the fetus.
Once the baby is born, CMV can manifest in all sorts of different ways: deafness, blindness, cerebral palsy, developmental delays, epilepsy, lung disease, autism and even death.
Some of these symptoms can take years to appear and are never traced back to congenital CMV.
This one virus causes more birth defects and disabilities in children than any other infectious disease. Yet somehow 91% of Americans don’t even know it exists.
“The revelation that CMV was so damaging and so silenced shocked me,” Nix tells The Post.
“I felt a shock mixed with a deep upset that this is happening — and nothing is really being done to support the families dealing with it.”
Nix sheds light on this common but obscure disease in “Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother’s Pursuit of Truth” (Doubleday).
As she learned more about CMV while advocating for her child, she felt she needed to tell expectant mothers about the dangers of this virus — and the shocking fact that obstetricians in the US are advised not to mention it.
“That was a motivating factor for me,” Nix says.
“It was like, there’s this silence [around the virus] and I’m a writer — I have a voice and a platform to acknowledge this historical medical untold thing.”
In the US, 40,000 babies are born each year with CMV; 6,000 to 8,000 of them will end up with lifelong disabilities.
While doctors warn pregnant women against the risks of lunch meats, sushi, and unpasteurized cheese, they don’t mention CMV, even if the patient has a young toddler at home.
Nor do they mention that women can take steps to help prevent themselves, such as thoroughly washing hands after changing a toddler’s diaper, kissing someone on the head instead of the face, or refraining from sharing food.
Furthermore, CMV isn’t thoroughly discussed in medical school, and hospitals don’t routinely test for it. Insurance companies won’t cover medications for newborns that are prescribed to stop the disease from spreading — as Nix found when she tried to get a life-saving antiviral for Anna shortly after her birth.
(The family had to pay $900 a month out of pocket.)
“On one end of the spectrum, I felt this panic about what I thought was going on, which is that Anna had something that nobody could name or understand,” says Nix.
“I felt a shock mixed with a deep upset that this is happening — and nothing is really being done to support the families dealing with it.”
Megan Nix on her decision to speak out about CMV
“And then at the other end was like a self-assurance that I was right — that a lot of other mothers were experiencing this and I needed to find them.”
Nix eventually connected with a network of these moms. Some had children who were severely disabled, on wheelchairs, and with limited movement.
Others were deaf but with cochlear implants who could speak and displayed no visual symptoms.
Some died within the first few years of their lives, while others were fully functioning adults with college degrees.
“Meeting these other families made me really want to remedy the situation — both in policy and in conversation,” says Nix.
“When Anna was first diagnosed, and I first found out she was deaf, I did go through a grieving process of the life I thought that we would have, but as time went along, that totally changed — as she changed she just opened my eyes to a completely different unforeseeable path for our family and for our children.”
Nix began leaving pamphlets about CMV at local OB offices — both in Alaska and near her other home in Denver.
She lobbied members of Congress to pass bills requiring that doctors disclose facts about CMV with pregnant patients, and advocated for hospitals to begin mandating testing newborns for CMV.
Anna was born deaf, and has had some developmental delays — she is tiny.
Now 8, she has cochlear implants which allow her to hear.
She speaks fluently, sings in the choir, and loves horseback riding and playing with her four brothers and sister.
Nix had three other children after Anna, including an infant born this year.
“[Anna] weighs less than our 5-year-old, but she doesn’t let that stop her in any way,” Nix said. Like her mother.
