CT Moms Fight for CMV Legislation

Attention, Moms: a pregnant women shouldn't kiss a toddler on the mouth.

Have you heard this vital advice at the OBGYN's office?

Maybe not.  But, some Connecticut moms are working feverishly to raise awareness about congenital CMV (cytomegalovirus) - a common virus that can pass from a pregnant woman to her fetus causing severe birth defects.

Last year at this time, Lisa Saunders of Mystic shared her daughter's story with Mommy Minute, as she worked to get a bill passed through the legislature that would mandate public education and testing of CMV.  The House passed the bill two days before the end of the session but the Senate never called it to vote.  Basically, the efforts stalled but Saunders vowed to come back this year - stronger and even more loud.

Now, the fight is on - once again - and more mothers are joining Saunders in her mission.

This year, the Public Health Committee passed HB 5525 which mandates that a baby who fails a required hearing screen must be tested for CMV.

New Canaan's Casey Famigletti testified at the public hearing

While her daughter was in-utero, she found out that the baby had a "marker" for CMV.  Doctors said she "probably" didn't need to worry.  But, Casey did indeed test positive for the virus.  The baby was born with symptoms at 30 weeks and stayed in the hospital for 72 days.  "The first misconception that I had about CMV was that it's a rarity.  But, now that I'm much more educated, I've learned that 1 in 150 children are born with it and 1 out of 750 are born with disabilities due to it," says Famigletti.  "To me, that's not rare.  It shows the OBGYN community's lack of knowledge about the virus which comes from a lack of education."

Here is important information from last year's story:

"The interventions are simple," explains Dr. Brenda Balch, a pediatrician with a specialty in hearing loss prevention. "When you're pregnant, it's 9 months of being more cautious in regards to the spread of disease." For adults and children, CMV is a common virus transmitted by person to person contact, causing mild, flu-like symptoms. According to the Centers for Disease Control and Prevention, 30,000 babies are born with the virus each year in the United States. Five thousand will suffer serious complications, such as mental disabilities, vision problems and hearing loss. Pregnant women who have toddlers or work in a daycare setting are most at risk and should wash hands often, especially after changing diapers or handling saliva-covered toys. Also: They should resist sharing food with a young child or kissing him or her on the mouth. "That's a hard thing to say to a pregnant woman but if it can prevent something like CMV, it's worth it," says Balch.

Famigletti's daughter, Gracie, is now 6 years old.  "She has bilateral cochlear implants - she hears with those.  She started walking when she was 4 so she has motor delays.  She was recently diagnosed with autism and she's fed through a feeding tube," says Famigletti, a mother of three.  She hopes to educate pregnant moms by sharing her experience.  "During pregnancy, you learn about a whole slew of things that you shouldn't be doing - like drinking alcohol, smoking cigarettes, changing kitty litter boxes, eating soft cheeses, deli meats...and I followed everything that my OB told me," she says, noting that if her OB had told her to be cautious around young children and avoid their saliva, she would have done that, too.  "Your child is eating mac-n-cheese and they finish-up, there's a little left and you take a bite of it.  The child looks totally healthy but you don't know if they're carrying this really common virus that's not dangerous to them but it's detrimental to a pregnancy."

This year's legislative session ends in early-June, meaning these passionate women have less than a month to get the House and Senate to pass the CMV Bill. 

To lend your support, contact your legislator.

Check out Stop CMV for more information about the virus.

 

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