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The Zika-like virus no one talks about


Families affected by CMV are frustrated by lack of public discussion

TRIBUNE PHOTO: JAIME VALDEZ - Northeast Portland mom Amy Nelson visits her son Nolan at the Providence Center for Medically Fragile Children every day. The 13-year-old was born with severe effects from a cytomegalovirus infection in the womb, leading to abnormal brain development. By now, just about everyone has heard about the Zika virus — a mosquito-borne pathogen that broke out recently in Brazil and is making its way to the United States. The virus is strongly suspected to be linked to a rash of microcephaly — babies born with smaller-than-average heads and associated brain development problems.

But there is another virus already in the United States that causes similar problems, and you may already have it.

Cytomegalovirus (CMV) is a herpes-like infection that — similar to Zika — at most causes a cold in healthy adults and children.

It poses a major problem only if a woman happens to catch it for the first time during just the wrong time, early in her pregnancy.

That’s what happened to Amy Nelson about 14 years ago.

“They told me it was extremely rare, but it’s not. It’s extremely common,” the Northeast Portland resident says. In fact, one in every two pregnant women have already had CMV and are immune.

The virus is the leading cause of infectious hearing loss and a leading cause of developmental disabilities. Nationally, it affects 0.2 percent to 2.2 percent of live births and is the most common intrauterine infection.

Babies who were infected can present a wide spectrum of disabilities — from no effect to varying degrees of deafness or blindness to major brain malformation, like Nelson’s son.

“There’s so many parallels to Zika and everybody’s freaked out about Zika, but the chance of getting CMV is so much higher,” Nelson says. The community of parents she knows, with children who have congenital CMV, are frustrated that suddenly this distant disease is getting all the attention.

“I don’t like to say the word outraged, but kind of,” she says.

Nelson lives a paradox familiar to many parents of children with disabilities. She wants more people to be aware of CMV and take precautions against it. But she also wouldn’t change her son Nolan for anything.

TRIBUNE PHOTO: JAIME VALDEZ - Nolan Nelson, 13, was affected by cytomegalovirus (CMV) when he was in the womb. CMV is much more common in Oregon than Zika and also causes microcephaly and developmental disabilities.

No one told about CMV

Nolan lives at the Providence Center for Medically Fragile Children. He loves the wind in his face and going over bumps in his wheelchair. His muscles are nowhere near as coordinated as other 13-year-old boys — his brain was unable to develop normally as a result of the in-utero CMV infection that stunted his head’s growth. Nolan never learned to talk or walk. He uses a little plastic tube through his stomach to eat, and he needs assistance with all of the activities of daily life.

Nolan gets shy when a reporter talks to him, and he lights up when he is around his mom and younger siblings — 3-year-old Hudson and baby Magnolia.

Nelson says she was extremely nervous during her pregnancies with the two of them — afraid of catching some other disease that she had never heard of before, once again.

“Every sore throat that I had, I was really, really nervous,” she says.

Nelson says the hospital gave her all the tests she wanted to set her mind at ease, but the idea to do the tests didn’t come from the health staff; she requested them. As public health organizations and the media write pages and pages on Zika, pregnant women are still not told about CMV and what to do to prevent it.

“Nobody has made it routine yet,” Nelson says.

Luck of the draw

Dr. Leonardo Pereira, chief of perinatology at Oregon Health & Science University, says that’s because unlike Zika, CMV is old news to health officials.

“In our region, in Oregon, CMV is a lot more prevalent than Zika,” Pereira says. “CMV is the most common congenital viral infection women get during pregnancy.”

So why don’t more women know about it?

The American Congress of Obstetricians and Gynecologists — the professional organization for pregnancy doctors — has little information about CMV on its website. The precautions against it are wrapped up in good hygiene — wash hands well, don’t share utensils with toddlers, use gloves when changing diapers.

But mostly, says Dr. Paul Cieslak of the Oregon Health Authority Public Health Initiative, it’s luck of the draw.

“There’s not a lot to do about it, frankly, other than avoiding all contact with people,” says Cieslak, the health authority’s medical director for communicable diseases. There is no vaccine for CMV and no treatment options once the virus is contracted.

Pereira suspects that in a decade or two, as people become immune, Zika will be a footnote just like CMV is now.

“That’s exactly what I think will happen,” he says. “In Brazil in the next couple years, you’ll see a huge drop off on this.”

Cieslak thinks Zika will be even less of an issue than CMV is now because CMV stays in the body and can reactivate, whereas indications are that Zika doesn’t.

“I don’t think we’ll need to worry about it becoming a problem (in Oregon) like CMV is,” Cieslak says.

TRIBUNE PHOTO: JAIME VALDEZ - Northeast Portland mom Amy Nelson looks at her son Nolan, 13.

Rare diseases abound

Zika and CMV are not the only causes of microcephaly.

“There are a whole host of viral infections that can cause a problem for the fetus,” Pereira says.

Pereira wonders if his clinics will start seeing more cases of babies affected by rubella, also known as “German measles.” The devastating disease has been eradicated in the United States, but with vaccines falling out of fashion in some groups, an outbreak could happen. The same thing could occur with chicken pox, which now has a vaccine, so unvaccinated adults are more likely to have not caught it during childhood, when the effects are minor.

Toxoplasmosis. Listeria. West Nile. The list of rare diseases with huge consequences for fetuses goes on and on.

“You could see how scary that would be to some,” says medical ethicist Nancy Berlinger of The Hastings Center, a medical ethics think tank in New York. “You could follow all the guidance but you could not perfectly protect yourself from all pathogens.”

Add to that, Berlinger says that as climate change progresses and as humans move about the planet more regularly, we are likely to see a big uptick in the spread of infectious diseases.

“Zika will not be the only virus we have to contend with,” she says.

Berlinger says both diseases are serious, but there are limits to how much risk can be avoided.

“Pregnant women are given all sorts of advice. It would be very hard to act on it all,” Berlinger says. “You certainly couldn’t go to work; you couldn’t touch anyone else. You couldn’t possibly live a human life.”

So, public health officials try to give actionable advice — like wash hands or don’t travel to Zika-infected countries — instead of scaring women with the laundry list of possible diseases and their effects.

“You never have everything under control, but you try to say: What reduces the risk of the virus in the environment?” Berlinger says.

In the case of Zika, it’s avoid those areas, or sex with men who have traveled there. For CMV, it’s wash your hands.

“Worrying is not the risk-reduction activity,” Berlinger says. “If only worry actually protected us from CMV.”

Congressional funding fight impedes Zika effort

Partisan bickering in the U.S. Congress is slowing funding to fight the spread of the Zika virus — particularly worrisome as the Southern states brace for an outbreak this summer.

A $1.1 billion funding bill was caught in a stalemate last week as House Republicans added multiple provisions they favored to fight the disease. That angered Senate Democrats, who said the bill was taking too much money away from Ebola prevention, cut financing from the Affordable Care Act, loosened regulations on pesticides and restricted the role of Planned Parenthood.

“Preventing the biggest provider of women’s health care from delivering health services in a bill aimed at fighting a virus that specifically impacts pregnant women is ludicrous,” Oregon Democratic Sen. Jeff Merkley said in a statement. “Instead of a serious effort to solve a real problem, we got a grab bag of right-wing favors.”

What is my risk of Zika and how do I lower it?

There have been 12 cases of Zika in Oregon, but all have been from people traveling to countries where there is an outbreak.

“Right now we know of no way Oregon mosquitos could transmit Zika,” says Dr. Paul Cieslak of the Oregon Health Authority’s Public Health Initiative. But it may be possible, he adds. “It’s not like the virus has tried all of our mosquitos.”

Women who are pregnant or could become pregnant are advised to stay away from countries with Zika outbreaks — about 50 countries, mostly in Latin America and the Carribbean.

Zika can be transmitted through semen, so public health officials say men who have traveled to infected areas should not have sex with women for eight weeks. If they have had Zika-like symptoms (a cold), they should abstain from sex with child-bearing women for six months.

Once a person has developed antibodies, they are immune to Zika. This might mean that the epidemic will burn out as the virus encounters more immune people. Cytomegalovirus (CMV), in contrast, stays in the body forever.

Shasta Kearns Moore
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