Taking Action and Raising Awareness: Real Stories from Families Impacted by CMV

In 2011, Ayako Kamei, Principal Scientist, Moderna Enzymatics, welcomed the birth of her second daughter after a routine and healthy pregnancy. Shortly after delivery, Ayako noticed that her daughter had red spots on her skin, from head to toe. That night, her temperature dropped, and her oxygen saturation levels were low, which gave Ayako cause for concern. Despite these abnormalities, Ayako’s doctor assured her nothing was wrong with her newborn daughter.

The next day, a routine blood test showed that Ayako’s daughter’s platelet count was dangerously low, and she was rushed via ambulance to the NICU. It took two weeks in the hospital and multiple blood tests to finally reveal her daughter had contracted cytomegalovirus, or CMV, in utero.

The Realities of CMV

CMV is a latent virus that is often mistaken for a common cold. More than half of U.S. adults over the age of 40 have been infected at some point in their lives, but pregnant women can unknowingly pass the infection to their unborn babies, resulting in devastating complications.¹

Congenital CMV is the most common infectious cause of birth defects and developmental disabilities in the U.S., impacting approximately one in 200 babies – more common than Down syndrome, fetal alcohol syndrome, and spina bifida. One in five babies born with CMV will have severe, life-altering health problems, such as vision impairment, hearing loss, or decreased muscle strength and coordination.²⁻³

Close contact with children less than three years old, such as at home or in daycare settings, is a common way to become infected with CMV.⁴ Simple hygiene practices – including thorough handwashing, kissing any children at home on the forehead rather than on the mouth, and avoiding sharing food, drinks, and utensils – can help curb the spread of the virus.

“Had I known about the risks of CMV while I was pregnant, I would have been much more careful while caring for my older children, but I had no idea CMV could cause my child any harm,” said Ayako.

The limited awareness around CMV is all too common. Despite the serious risks of pediatric birth defects, 91% of women have never heard of CMV.⁵ Most people, including Samantha Nikirk, only find out after their child has been impacted by the virus.

Evie’s Story

Samantha’s daughter Evie was born two weeks early, without complications. She was very small, weighing only 4 pounds and 10 ounces, and like Ayako’s daughter, Samantha also noticed dark spots on Evie’s face that resembled bruising.

While Evie failed her initial hearing screening and appeared to have newborn jaundice, doctors cleared her to go home the day after she was born. She was growing steadily and appeared healthy.

After one month, Samantha noticed her newborn was sleeping through all kinds of loud noises. “She would sleep undisturbed in her bassinet no matter how much noise was going on around her. The dog could be barking, her sister could be screaming – there was absolutely nothing that could wake her up.”

Samantha eventually took Evie back to the doctor, where their lives were changed forever: it was revealed that Evie was deaf. It was only a test using remnants of dried blood spots from Evie’s newborn screening card that confirmed her symptoms were the result of CMV.

“At the time, it felt like everything we had ever taken for granted had been taken away by a virus we had never known existed,” said Samantha. “Our family’s lives were changed overnight.”

Turning the Tides Against CMV

Despite living in different parts of the world and sharing different personal experiences with CMV, both Ayako and Samantha have been determined to make sure families know about this hidden threat and take every step possible to protect their babies. In the U.S., Samantha works with local and national CMV advocacy groups to educate, legislate, and advocate for sensible CMV prevention, screening, and treatment policies.

“Had Evie been diagnosed at birth, she could have been treated with antivirals that may have helped address some of her permanent symptoms, including hearing loss, but these must be started in 30 days. Evie wasn’t diagnosed until four months,” said Samantha. “Parents have a right to know about CMV and the medical community has an obligation to educate patients. That’s why I’m working with other families to advocate for sensible CMV prevention, screening, and treatment policies.”

Ayako, a scientist by trade, was motivated by her experience to join Moderna as a Principal Scientist working with cell-free DNA synthesis and amplification technologies, in pursuit of impacting as many people as possible with mRNA medicines. Moderna’s broad pipeline looks to address many diseases that represent significant unmet medical needs through investigational mRNA candidates comprised of both vaccines and therapeutics. One such candidate is Moderna’s investigational CMV vaccine candidate, mRNA-1647, which is designed to produce an immune response against both the pentamer and gB for the prevention of CMV infection. mRNA-1647 is currently being evaluated within the Phase 3 CMVictory trial, with the hopes it may one day protect pregnant people – and their babies – from contracting the virus altogether. Currently, there is no approved vaccine to prevent CMV.

While both Ayako and Samantha’s daughters have faced long-term impacts from CMV, they continue to make strides and overcome significant obstacles, which only further motivates them in their efforts to combat the virus.

“I don’t want other parents to experience the same grief and pain that I did,” said Ayako. “By sharing my story, I hope that pregnant women, their families, and those who are thinking about having children, will have the knowledge they need to protect themselves against CMV.”

For more information on CMV, visit NowIKnowCMV.com.