The state of New York plans to add testing for Cytomegalovirus, known as CMV, to its Newborn Screening Program beginning this fall.
WSHU’s Madi Steddick spoke with Dr. Sharon Nachman, the division chief of pediatric infectious diseases at Stony Brook Children’s Hospital, who is leading a year-long pilot program.
SN: Cytomegalovirus, or CMV is an infection that many of us see over our lifetime. The older you are, the more likely you are to have had seen this infection, but probably didn't notice it or didn't pay any attention to it. Sometimes people get a flu like illness, sometimes people have something that looks similar to [mononucleosis]. The issue with CMV, that we're concerned about, is that for women who acquire this infection during pregnancy, there can be long-term issues with their infants.
WSHU: How common would you say this virus is?
SN: So the virus itself is very, very common. The question is, how often will someone who have had this virus before they get pregnant, versus how common will occur while they're pregnant. The vast majority of people will have had the virus, either before they're pregnant, or later when there are children in school and bring it home from contact from another child. But concern is for those women who've never had the virus before. Getting the virus during pregnancy can be an increased risk.
WSHU: So with the way you word that, I'm curious, is it possible to get CMV multiple times in your life? Or is it kind of a one and done deal?
SN: It's a one and done deal.
WSHU: Alright, how is this virus most commonly spread? How does it really get around?
SN: Well, first of all, it's quite easily spread. And it's often more from children to parents, because children acquire it in school, and politely said they don't wash their hands. They don't. You know, they're not careful when they're coughing and sneezing. So they bring it home from school, having acquired it from another child.
WSHU: And how often would you say that pregnant people pass this virus to their unborn children?
SN: So the current thinking is that it's quite low in passing it, perhaps, point 5% of all pregnancies. And one of the focuses of the study that we're participating in, is to see what's the actual number of women who are passing infection to babies? Because we really don't know.
WSHU: Is there a particular way in which this virus typically passed from the parent to the fetus? Is it through, like feeding any specific way.
SN: So from the parent to the fetus, it passes in the parents bloodstream, and that bloodstream crosses the placenta. And that is how the baby can get infected. Outside of pregnancy, it's a very easily passed virus just by sneezing and coughing on one another.
WSHU: And for an infant to be infected with CMV, rather than cCMV, is that something that would typically be less severe, maybe cause less permanent side effects?
SN: No, it's actually not awful at all for those infants that get CMV, you know, in daycare or something like that. They may have some fever or some respiratory viral illness. And that's pretty much it. Our real concern for CMV is those infants that acquired it congenitally while they're in utero.
WSHU: So moving a little forward onto the newborn screening program: what testing is already covered or provided through that program for other diseases?
SN: Currently, New York state includes 300 different tests as part of the newborn heel stick testing, the addition of this test, which will be non an antibody test, which is not specific, but a PCR test of the blood, which is specific for virus
WSHU: In terms of the effects of cCMV on children who are born into it, will permanent hearing loss and cognitive delays always be the results or are there any other sort of side effects that can occur?
SN: We assume that the vast majority of children who have congenital CMV or cCMV, in fact, have no sequela, we assume that they will be fine. One of the objectives of this long-term follow up study is to see which children may develop hearing loss, or may develop some learning issues, because we really don't know how commonly that happens.
WSHU: And since most infants with cCMV tend to be asymptomatic at birth, when does one typically find out about the effects of cCMV? Or that it happened at all?
SN: So the answer is, unfortunately, most parents never find out. Because unless you test the baby with the correct test at the right time, meaning the first three weeks of life testing after that doesn't tell you anything at all, because it could be an acquired infection. And as you know, the acquired infections do not have the same long term concerns that a congenital infection has. So someone at age five that has some hearing loss, it could be a congenital infection, or it could be something else. But we can't say, and that's why following children from birth on is so important.
WSHU: Yeah, that's quite unfortunate. So on that same line, once a fetus is infected with cCMV, is there any action that can be taken?
SN: The first and most important thing is to see how affected they are. A very, very small percentage of children will be quite ill at birth. For those children, we will start on medication right away, the vast majority of children that are asymptomatic, we will not cheat, but rather will follow them and to see how they do.
WSHU: What does treatment tend to look like? Is it a pill, injection? Does it tend to be into the mother while she's still pregnant?
SN: So at this point, we are not going to be treating any parent, because our study, our information starts from the time the baby is born. So there's no possibility for us to discuss any parents' treatment because we're not there at that time. We're starting from the time the baby is born. The treatment for the baby, depending if they can swallow liquids or not swallow liquids, would be a specific medicine against CMV and antiviral. That medicine is available in IV formulation as well as an oral liquid. And depending on the baby, we will give them the appropriate formulation.
WSHU: All right. And I'm curious, are there any preventative measures that expecting mothers or parents can take seeing as the disease tends to have no symptoms shown?
SN: At this point, there are none. Good hygiene obviously is important. Good hand washing if your children are in school, and when they come home is important. But in the future, there is a hope that we will have a CMV vaccine, and that vaccine would be given before anybody gets pregnant. So we would avoid the whole issue of acquiring infection during pregnancy.
WSHU: But if a pregnant person experiences some of the symptoms that are characteristic of CMV, like cold, like symptoms, like sore throat, fever, tiredness, is that a time when they should contact a doctor or go to emergency care? Or is it better to just ride it out?
SN: At this point, the testing for it is very specific. And we would not recommend they go to an emergency room only because there were so many other illnesses that happen at the same time that look exactly like that. It could be flu, it could be a respiratory virus, rhinovirus, it could be anything. So requesting CMV testing for every upper respiratory infection that every pregnant woman has, is not realistic.
WSHU: And for positive screenings, what does the follow up and evaluation typically tend to look like both for the baby and the parents? Is there a certain timeline that it goes through?
SN: So right now we are asking to see these children every six months, and that would be in addition to the routine well-child care that the child's pediatrician would have.
WSHU: All right. And can you just quickly describe for me a timeline from the screening to the sample gathering and all the way to gathering and receiving that newborn screening report? What does that look like?
SN: The babies are born, they will often get the heel stick testing on day one, before they leave the hospital. The heel stick test gets sent to New York state. They're run 24/7, they're always run. The result is usually available within five to seven days. If a result is positive, the parents will receive notification from the state. And the institution such as Stony Brook, which is one of the sites for the study will also receive the same notification, as will the child's pediatrician, if the family has identified a pediatrician, and then between the pediatrician and the specialty care provider, we will reach out to the family say that we've gotten this notification and then we would like to see them, they will come in hopefully within the next week or so, and have a confirmatory test done. And the confirmatory test is easy because it's a urine test, no sticking for blood or anything like that. Once the confirmatory test is sent, it takes about 48 to 72 hours to come back. And at that point, we will know more information to be able to discuss with the family the next steps.
WSHU: Do you believe that there is a particular reason why parents may decide to opt out of having the screening results recorded? Does this record have any effect on the baby or parents future events?
SN: I think that parents may opt out because of the concern about something new. And it is important to talk to them about this is not a new disease, but rather we're getting smarter about diagnosing and treating it if we have to treat it. So I think knowledge is important and information. And families need to know if this screen test is positive or negative.
WSHU: Is there a particular reason that this testing will only be active for a period of one year? Is it just a pilot period? Is it going to be implemented in the future more deeply?
SN: I think it is a pilot period with the goal that it will be implemented forever after. And that is what's so important is that we need to be able to tell families how often this happens and what are the next steps. So yes, it's a pilot project with a goal of funding it continually after.
I think it's important for parents to talk to their child's provider about why we're doing this test, what it means, and then seeking specialty care if the test is abnormal or positive.
