Rep. Michael Unes (from left), Co-sponsor of the Bill and representative of CMV mom Kathy Keefauver, Kathleen Jones (mother of Erica Steadman), Erica Steadman, Kathy Keefauver, CMV mom from Peoria, Jan Wys (Step-mother of Kathy Keefauver) and Fritz Wys (Father of Kathy Keefauver).

While the global public health community is trying to get ahead of — or, catch up to — the Zika virus to stem the number of children born with complications because their mothers were infected by Zika during pregnancy, one Crete, Ill., mother can relate all too well.

And Illinois women will start seeing the effects of this mom’s tenacious healthcare-advocacy as state laws that she helped pass will go into effect throughout 2016.

But it’s cytomegalovirus (CMV), not Zika, that attacked the second pregnancy of Erica Steadman, 29, giving her daughter Evelyn, among other impairments, what has become the de facto hallmark of Zika, microcephaly, which is a condition where a baby’s head is too small and brain development is limited.

In fact, as far as can be confirmed by the Centers for Disease Control and Prevention, CMV affects more lives than Zika or pretty much any other viral infection, said Janelle Greenlee, one of the founders of the National CMV Foundation.

According to the Mayo Clinic website, CMV spreads from person to person through body fluids, such as blood, saliva, urine, semen and breast milk.

“You’re going to hear that CMV is rare because people aren’t being diagnosed with it. Pregnant women aren’t being diagnosed during pregnancy and babies aren’t being diagnosed in infancy,” Greenlee said. “It goes under the radar because it doesn’t manifest with anything obvious like a rash.”

Elephant in the Room

“One in 150 children will be born with [CMV] in them, and one in five of those will actually go on to have long-term effects of the disease,” Greenlee said, which can include deafness, microcephaly, cerebral palsy, vision loss and seizures.

Evelyn, August 2015

She developed the Stop CMV brand and website in 2003 after her twin daughters, Riley and Rachel were born with congenital CMV. Rachel had profound microcephaly and died at age 11.

“Microcephaly ultimately is was what took her,” Greenlee said. “Her brain did not develop to a point that it could support life and her body long-term.”

STOP CMV joined three other prominent CMV nonprofits to create the National CMV Foundation in 2015.

“CMV is actually a common virus. It’s one that ideally, you should catch in childhood,” Greenlee said. “But if you do happen to acquire it in adulthood and during pregnancy, it could cause problems for your baby. CMV doesn’t have a lot of symptoms; it acts like a cold or the flu. … It goes under the radar because it doesn’t act like anything really outrageous or obvious.”

The problem is, the public just doesn’t know about CMV.

That lack of CMV education, awareness and options is what Steadman set out to change by way of Illinois law.

“Any woman interested in reading about Zika, should know about CMV, too,” Steadman said.

“CMV is the most common virus people have never heard of,” said Dr. Gail Demmler Harrison, an infectious disease physician at Texas Children’s Hospital and a professor of pediatric infectious diseases at Baylor College of Medicine, who has been studying congenital CMV since 1982.

Turning the tide, though, “starts with an ounce of CMV awareness,” she said. “You have to know that it exists. And it’s not the pregnant woman’s fault she doesn’t know CMV exists. It’s actually our public health officials and our medical community. I think in that giant bag of stuff that you take home about lunchmeat and sodas and wine and cat litter, that there ought to be at least one pamphlet about CMV.

“We don’t have a traditional, injectable vaccine for CMV, and it’s not anywhere in the near future. The virus is much too smart and much too complex,” Demmler Harrison said.

She suggests behavioral modifications in line with the CDC’s suggestions in the sidebar to minimize risk for exposure to CMV.

Illinois Impact

Steadman was asymptomatic throughout her pregnancy, unaware that she had contracted CMV. Then Evelyn was born at 34 weeks gestation with microcephaly, among other problems, and Steadman’s world changed.

“I was dumbfounded that women don’t know about CMV. [The doctors] have this pamphlet that they gave me when [Evelyn] was born with CMV. That was too late. They had this information and they didn’t share it when it mattered.”

Steadman knew after Evelyn was born that she had to do something.

“If I do nothing about this and I don’t say anything and I don’t speak up, then I’m not really honoring the type of fight that my daughter went though — and still continues to go through. I want to honor her in that way,” Steadman said.

Evelyn’s second cochlear implant surgery— October 2014

Steadman teamed up with Elaine Nekritz, who currently is serving her seventh term in the Illinois House of Representatives representing the 57^th District, and they started working on a two-part bill that was modeled off of the CMV law in Utah.

While their first attempt in 2014 did not succeed, their second one in 2015 did and it became law on Jan. 1, 2016.

“There needs to be more education about CMV, and [this bill] seemed like the best way to purse that,” Nekritz said. “There will be greater awareness among women who are about to become pregnant or who are pregnant about the risks of CMV and what could be done to avoid it.”

Steadman and Nekritz’s bill, HB 184/PA 99-0424, proposed the development of an education program by the Department of Public Health, which would also publish informational materials regarding CMV for pregnant women or women who may become pregnant. This information would be available to any doctor, not just pediatricians or OB/GYNs.

“Any doctor can talk about this with his patients and provide materials about CMV to guide women in the right direction for the right information,” Steadman said.

Family Christmas 2015- (from left) — Justine (3 1/2 years), Joe Steadman, Erica Steadma, Evelyn (2 1/2 years).

As for when this gets implemented, Nekritz said that it depends on the state budget.

“What I don’t know right now is if the necessary resources are available to [the Department of Public Health] since we don’t have a budget. There’s only so much you can ask you people to do when they don’t have resources to do it,” she added.

“The second part of the bill, which I know for sure is being implemented right now because I’ve seen it at hospitals, is that if a newborn in Illinois fails both hearing screenings that they by law have to take before being discharged  … the parents have to be given information about CMV and an option for a salvia test for CMV,” Steadman said.

“The CDC does care about [CMV],” Greenlee said. “They do realize that this is an important public health threat. The larger thing is that there’s a lot of public threats. … This is why I believe the state bills are extremely important right now because what we’re seeing is as long as states not only pass the legislation but go on to foster and fund longer, sustainable CMV education programs, that becomes a nation-wide effort that [can transform] public health.”

6 Ways to Reduce Risk of Exposure to CMV

1. Wash your hands often with soap and water for 15-20 seconds, especially after
   • changing diapers,
   • feeding a young child,
   • wiping a young child’s nose or drool, or
   • handling children’s toys.
2. Do not share food, drinks, or eating utensils used by young children.
3. Do not put a child’s pacifier in your mouth.
4. Do not share a toothbrush with a young child.
5. Avoid contact with saliva when kissing a child.
6. Clean toys, countertops and other surfaces that come into contact with children’s urine or saliva.

— the Centers for Disease Control

— ‘The most common virus people have never heard of:’ No, it’s not Zika —