Mystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware

Author’s update: Yesterday Governor Dan Malloy signed a congenital cytomegalovirus (CMV) law requiring a CMV test for newborns who fail an initial hearing screen. It was exciting news for Lisa Saunders, a Mystic mom who has long advocated for congenital CMV awareness and legislation.

“I was overwhelmed when I heard the news the governor signed it,” she said. “It's been years of struggle to get people to pay attention to this number one viral cause of birth defects. I've written books and articles and given talks on preventing this disease with little long-term results. This law will require newborns who fail the hearing screen to be tested for cytomegalovirus. If it tests positive, the baby will receive the early intervention they need to improve their outcome in life. This testing should raise awareness of the disease, which will then cause people to ask how it can be prevented in the first place.”

Saunders’ long struggle for this type of legislation is described in the story below. 

Lisa Saunders’ quest to raise awareness began with a dream, a bad one.

In the dream, the Mystic mom was at a support group for the mothers of children with the congenital form of cytomegalovirus, which is a common and all-to-often overlooked condition that when contracted by pregnant women can produce lifelong, sometimes fatal, disabilities in their offspring. The moms in the dream were angry they had not been told about this virus—which in most cases can be prevented by simple precautionary measures—and they went around the room sharing stories about how they only recently learned about it. Then they asked Saunders when she found out about it, Saunders was consumed by a mixture of guilt and embarrassment.

“I’ve known for 16 years,” she said sheepishly. All the parents looked at her and asked a question that would haunt her long after she woke up: “How come you didn’t tell us?’”

* * *Saunders’ daughter, Elizabeth (right), was born shortly before Christmas December 1989. As soon as she saw her child for the first time, Saunders was worried. “I knew she was in trouble when I saw her, her skull was very narrow and doctors initially thought she didn't have a brain, but they did a CT scan and she did have a brain but it was filled with calcium deposits and holes,” recalls Saunders. Ultimately, doctors tested Elizabeth for congenital cytomegalovirus and confirmed she had the disease and it had caused the calcium deposits in her brain. Saunders and her husband Jim were told their daughter would never be able to roll over, sit up, talk or feed herself.

Perhaps most heartbreaking of all, as Saunders learned more about the condition, she discovered it probably could have been prevented.

“Cytomegalovirus, or CMV, is the most common virus most people have never heard of,” Dr. Gail J Demmler Harrison, tells Connecticut Magazine by email. Harrison works at the Congenital CMV Disease Research, Clinic & Registry, at the Baylor College of Medicine in Houston, Texas, and knows Saunders through their mutual CMV awareness efforts. Harrison explains, “It is not unusual or rare to be infected with CMV, it is very common. However, the timing of CMV infection is important.”

If a child or adult gets the virus it is generally harmless. “It is a ‘stealth virus’ and commonly infects us without any symptoms,” Harrison says. “Yet it can devastate the vulnerable fetus and newborn. Pregnant women should avoid being infected with CMV for the first time during their pregnancy because it can be transmitted to their unborn baby, and sometimes this infection of the unborn baby can have devastating effects and may even be fatal.”

The effects of Congenital CMV are not always as severe as what Elizabeth suffered, but they can often be life altering. According to the Centers for Disease Control and Prevention the condition, in conjunction with other health problems, can cause lack of coordination, seizures, vision loss and is a leading cause of hearing loss in children.

About 1 in every 750 children in the United States is born with or develops permanent problems due to congenital CMV infection. This translates to more than 5,000 children being born each year who suffer permanent problems caused by CMV infection.

The good news is that the chances of contracting the disease during pregnancy can easily be dramatically lowered. “CMV infection during pregnancy is avoidable and preventable with an ounce of CMV awareness and three simple hygienic precautions,” Harrison says. “Do not kiss infants and toddlers on the mouth or cheek, do not share food or drink or tooth brushes with toddlers and wash your hands carefully after changing diapers and wiping toddlers' noses and faces.”

Before Elizabeth’s birth, Saunders was living in Maryland and ran a small licensed daycare. She also had another daughter, Jackie, who was born a few years before Elizabeth. As Saunders learned more about the virus, she came to believe she likely contracted the virus from one of the small children in her daycare center. Like those mourning mothers in her dream, she wondered why nobody told her about CMV, why nobody warned her to be more careful.

(Jackie and Elizabeth Saunders are pictured below while they were both teenagers and on vacation)

* * *

Elizabeth had a difficult life.

She required constant care and was beset by chronic seizures that grew worse as she grew older. Her parents “had terrible medical decisions to make all the time,” as they were forced to decide whether to have Elizabeth undergo dangerous and invasive procedures that doctors said could possibly help her. But she was also at times a happy child with her long, brown hair, big blue eyes and a beautiful smile that her mother describes as "soul-capturing."

During the winter of 2006, less than two months after her 16th birthday, Elizabeth died of a seizure. She weighed just 50 pounds at the time of her death.

Prior to that moment, Saunders had been too busy taking care of her daughter to work on CMV awareness, or keep up with the latest information on what pregnant women were being told about the risks associated with the virus. “I was just trying to keep her alive,” recalls Saunders.

As she mourned her daughter’s death, Saunders began researching the disease on the internet. She remembers believing that awareness of the risks of the virus had likely increased in the years since her daughter was born.

It hadn’t, and Saunders was shocked. “I was like, ‘Oh my gosh, women are not being warned. They’re still not being warned. It’s not standard practice of care.'”

Then, she had that haunting dream.

Ever since, Saunders has been dedicated to telling everyone she can about the condition and how it can be prevented. She does this through her online writings, her book Anything But A Dog!: The Perfect Pet For A Girl With Congenital CMV (cytomegalovirus), publicity appearances and through work with Connecticut politicians on legislation. Last week she testified before Connecticut policy makers in support of a bill that would require newborn screening tests for cytomegalovirus (more can be done to halt the negative effects of the virus if it’s discovered early) and establish a public education program for it. This education program would include raising awareness and providing licensed daycare providers with more information about the virus and the risks for pregnant employees and mothers whose kids are in daycare.

“I would like to see education be mandatory by the health department,” Saunders says. “I want to see, before you get the licensing for a daycare center, that you realize this is a virus that you need to be aware of. I’d like there to be information for mothers dropping their children off as most mothers are going to catch it from their own child, especially if the child is in daycare. They’ll know that 'I should not kiss my toddler around the mouth, or share a cookie with him when I’m trying to become pregnant or am pregnant.'”

Ultimately her goal is to make sure no one else has to unnecessarily go through what her and her child did. “I just can't tell you what us parents feel like when we learn that there is actually something that our doctors didn't warn us about,” she says. “It's a tragedy that doesn't need to happen.”

Contact me by email eofgang@connecticutmag.com and follow me on Twitter, and connect with Connecticut Magazine on Twitter, on Facebook and Google +

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