Mom Is Devastated to Learn Her Infant’s Deafness Came From a Common Virus She Didn’t Know She Had

If she hadn’t been pregnant, Erin Swetnam might never have known that there was something different about the “cold” she had.

Erin Swetnam

Erin and Jeff Swetnam of Arvada, Colorado, had only recently learned they were expecting their second child when Erin came down with a nasty virus. She told Independent Journal Review:

“Early in my pregnancy, I became very sick with a sore throat, muscle aches, and severe weakness.”

Though she improved over time, Erin continued to feel fatigue and “mono-like symptoms” all the way up to six weeks before her delivery. Still, she didn’t realize that her illness might affect her baby until a routine ultrasound pointed to some possible complications.

Erin Swetnam

At Erin’s 20-week scan, the doctor could not see the fetus properly because the mom was “carrying so low.” A follow-up trip to a high-risk obstetrician showed that the baby had low amniotic fluid and his prenatal growth was slow.

Worried about a chromosomal anomaly, Erin had more tests, including amniocentesis. It was a stressful time for the family. And as Erin told IJR, the good news that followed was only temporary.

“After days of waiting, the results came back normal. Jeff and I thought we were in the clear, but we were wrong.”

After testing the amniotic fluid for other issues, the doctors, “almost as an afterthought,” ordered one more test. When it came back, they gave Erin and Jeff the bad news: their unborn son had congenital cytomegalovirus (CMV), passed on when Erin had been ill during pregnancy.

Erin Swetnam

Though CMV is extremely common, Erin had never heard of the virus and had no idea that it was behind her aches and fatigue. She told CBS Denver:

“I had never, ever, heard of it and most people I talk to about it have no idea what it is.”

According to the Centers for Disease Control (CDC), more than 50 percent of adults have been infected with CMV before age 40. Once infected the virus remains in the body for life.

Erin Swetnam

The virus is also extremely common in young children. The CDC estimates that one in three children become infected with CMV by age five. Because children can be infectious but show few (or no) symptoms, those who care for young children are especially at risk for infection.

The virus is passed on in bodily fluids like urine or saliva. This means that moms of toddlers and others in contact with children should thoroughly wash their hands after contact with bodily fluids — such as changing diapers, wiping noses, or picking up toys.

Erin Swetnam

Both the National CMV Foundation and March of Dimes caution pregnant women against things that could bring them in contact with children’s saliva: including sharing utensils, toothbrushes, putting a pacifier in your own mouth, or even kissing a young child on the lips.

Usually, CMV is harmless and the symptoms (which mimic a common cold) will only last a few weeks in a healthy child or adult.

Erin Swetnam

However, CMV can cause serious problems for two groups: those with weakened immune systems and babies who contract CMV while still in the womb. Approximately one in 150 babies is born with congenital CMV, which causes serious health problems.

Sadly, Matthew Swetnam was one of them.

A prenatal MRI showed that Matthew had two cysts on his brain. He also developed a small hole in his heart and his prenatal growth continued to slow. By the time Erin went into pre-term labor, her son was 18 days behind schedule in his growth.

Erin Swetnam

On March 26, 2016, Matthew was born eight weeks early via emergency C-section. He weighed only two pounds, 11 ounces at birth. Erin told IJR that his condition meant that her son was rushed to the NICU after birth and quarantined:

“Because he had contracted congenital CMV, Matthew was in an isolation room separate from the rest of the NICU babies. Jeff and I had to put on protective gowns and gloves in Matthew’s room to help prevent the spread of the virus around the rest of the NICU.”

In the weeks following his birth, Matthew was put on antiviral drugs and received blood cell and platelet transfusions. Tests revealed numerous health problems and complications, including severe hearing loss.

In August, Matthew received bilateral hearing aids. A video of the baby boy hearing for the first time went viral on social media, amassing more than 40 million views. In a few more months, he will get a cochlear implant.

On Thursday, Matthew received his hearing aids, which he'll wear until he receives his cochlear implants. It's been amazing to see him finally responding to sounds! #stopCMV

Posted by Erin Manion Swetnam on Sunday, August 7, 2016

Now a year old, Matthew has grown to eighteen pounds. His mother told IJR:

“We are very pleased with his progress, but we are starting to notice some developmental delays. Because of low muscle tone and balance issues, he has trouble sitting on his own and has not started crawling yet. Additionally, because Matthew is deaf, his speech is delayed. He also has trouble with his fine motor skills. These issues are common among congenital CMV babies.”

Erin says her son faces years of therapy and appointments with specialists. Matthew has already started speech therapy, sign language lessons, and physical therapy. Doctors continue to monitor his brain development, and he has regular visits with an infectious disease specialist, ophthalmologist, and neurologist.

Erin Swetnam

His mother told IJR that caring for her son has become her new full-time job:

“For several years, I worked as a corporate attorney for a non-profit. However, because of Matthew’s needs and many appointments, which will number at least six per week once he receives his cochlear implant, I recently made the decision to quit my job so I can focus on his health.”

Now, the Swetnam family is dedicated to educating others about congenital CMV. Erin told IJR that only nine percent of women even know about CMV, despite its devastating effects:

“Although congenital CMV is similar to the Zika virus, it is much more common and, therefore, a greater threat. It is the leading viral cause of non-hereditary deafness, birth defects, and developmental disabilities.”

Erin encourages any woman hoping to get pregnant to get tested for CMV beforehand and, if positive, to wait 6 to 12 months for the virus to resolve before conceiving. For those, like Erin, who contract CMV while pregnant, amniocentesis can discover whether the virus has passed to the child.

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