State senate considers mandatory screening test for a virus in newborns

This is All Things Considered on 90.9 WBUR. I'm Lynn Jolicoeur. A bill before a state Senate committee would require a new screening test for all newborns in Massachusetts. The test is for congenital cytomegalovirus. That's a common viral infection that passes from mother to fetus during pregnancy. It affects about 1 in 200 babies in the U.S. If it isn't treated early, it can cause hearing loss, vision problems, and even death. Sarah Holcomb is from Watertown. Her son, August, was diagnosed with the virus when he was two years old. Sarah's here to tell us why she wants the new law passed. Hi, Sarah. Hi. Thanks for having me. Sure. So tell us how the virus has affected your son, August. Yeah, the virus has affected August's life in a number of ways. I'd say the biggest is that he's deaf and hard of hearing. He also has some vestibular challenges and some vision loss. All of this will be likely progressive. How did the diagnosis happen? Because that was quite a journey, right? You've used a term, a diagnostic odyssey? Yes. So when August was 18 months old, his daycare teacher noticed that he was a bit unbalanced and asked us to take him to the pediatrician for likely an ear infection. And from that day, it took us nine months to get a diagnosis of CCMV. We basically were admitted to neurology for a few days when it first started. And then we got more detailed MRIs revealing brain abnormalities, but with no explanation. We were told to check his hearing, but we had done almost 40 different tests at that point. I actually took him alone to the hearing test, thinking it was a routine test, and he didn't react to sound after sound after sound. Our neurologist tried one last test and she was able to determine it was congenital CMV. Wow. So what is happening most of the time in Massachusetts in terms of any screening or how babies or toddlers are being diagnosed with this? Many hospitals have their own protocol. There is not a statewide protocol, but in general, if a newborn fails their newborn hearing screen, they will test for congenital CMV. The problem with that is many of the newborns with congenital CMV pass their newborn hearing test. Because the hearing just hasn't declined. Exactly. So we're missing so many of these babies. There's an antiviral medication that could stop the hearing loss, which obviously would have a lifelong impact for the child and the family. Now you and other parents have been pushing for legislation for several years, and the Massachusetts House did pass a version of this bill, and now it's before the Senate Ways and Means Committee. It's been endorsed by hospitals. What exactly would it do? What are you calling for? So the bill has two components. The first is a newborn screening. So every baby born in Massachusetts would have the saliva test. The most important timeframe is that you're diagnosed in the first three weeks of life and you start the antivirals as soon as possible. And the other component is education. So educating prospective parents, prospective mothers about how the virus has passed and how to prevent that. Exactly. Things like don't share utensils with an older child. Don't drink after your children. The virus is often spread in daycares. So often the older child in a household would give it to the mother. So just a lot of hygiene around. Wash your hands frequently, especially after changing diapers. Exactly. This seems so simple and kind of like a no-brainer, if you will, that we would screen newborns for this. What has the barrier been to this happening? The virus is a bit complicated medically because it crosses so many specialties. So getting enough momentum behind it has taken a long time. But now we have examples of states who are doing this newborn testing. We have the heft of all these hospitals, our deaf and hard of hearing schools that are now behind the bill. The combination of our family stories and all these institutions is really what's different this time. Sarah Holcomb's son, August, has hearing loss from congenital cytomegalovirus. She's advocating for universal screening of newborns, which state lawmakers are considering in a bill on Beacon Hill. Sarah, thanks so much for your time with us today. Thank you.