Loss and love: Author raises awareness about preventable birth defect

Lisa Saunders sets up a chair in memory of her daughter, Elizabeth, every year at Christmastime.
Lisa Saunders sets up a chair in memory of her daughter, Elizabeth, every year at Christmastime.

"My daughter Elizabeth would have turned 24 today, December 18, 2013."

So begins the blog Lisa Saunders of Mystic updates every year, with the entry titled "The Empty Christmas Chair — holidays without my daughter."

How does one begin to fathom the loss of a child? Let alone to a virus that can easily be prevented through the smallest things, like not kissing young children around the mouth or sharing food and towels with them when you're pregnant. Congenital Cytomegalovirus (CMV) is the #1 viral — and most underreported — cause of birth defects.

Saunders did not become of aware of these simple precautions until it was too late. She was not told that preschoolers are the majority of carriers and not only did she have her own toddler at the time of her pregnancy with Elizabeth — Saunders also was running a licensed daycare center in her home.

Elizabeth, who died at 16, did not have a milder case of congenital CMV — which can cause hearing loss and learning disabilities later in life. She was born with a very small brain and as a result was seriously disabled by the virus, wheelchair-bound, and in need of round-the-clock care.

Today, Saunders is the parent representative for the congenital CMV Foundation. Her mission is simple: to make the CMV prevention message for pregnant women as well known as the "don't change the kitty litter" rule. Why aren't doctors sharing this information with pregnant women when there are so many simple CMV prevention steps?

"They may be telling women to wash their hands, but not why," Saunders explains. "Most people know they shouldn't be changing the kitty litter, but don't think about not kissing their kid around the mouth. It's not meant to freak people out, but people in daycare are more susceptible. CMV only lives on the surface for 30 minutes, so it's relatively easy to prevent if you just wash your hands before eating — stuff your mother told you is really true and can have life-changing consequences."

How did Saunders cope with her daughter's devastating prognosis?

"At one point I couldn't get out of bed," she says. "But I also had a three-year-older daughter, Jackie. I had to function."

Faith was also high on the list. Already a Christian, Saunders admits this was an issue of her faith being sorely tested.

"But God is (who) I have in heaven, so I'm going to stick with him," she says. "It's a decision I made. The Psalms really helped me."

Writing, she says, also pulled her through.

Before moving to Mystic from New York with her husband Jim three years ago, Saunders was a full-time writer for the campus communications department for Rockland Community College. Elizabeth's birth, she says, propelled her into her own personal writing.

"Writing really helped me organize my thoughts, and I realized, 'This isn't so horrible.' We could move forward as a happy family even though my daughter had such a severely damaged brain."

But it was a slow and heart-wrenching process to get to a place where she could appreciate her daughter exactly as she was, and for Saunders to regain her wonderful sense of humor.

"Probably eight months after Elizabeth was born I realized I could laugh. I always enjoyed writing humor and the writing brought the humor back," she says. "I want to be happy and I want other people around me to be happy. And the reality is, no matter how horrible life is, you can always find something to be happy about."

In 2009, Saunders published "Anything But a Dog!" humorous stories about giving into six-year-old Jackie's plea for a pet, while coping with the enormous challenges of a disabled younger child. Even her latest memoir, "Mystic Seafarer's Trail," reflects her sense of humor and ties into CMV prevention.

"It's a humorous and historical look at Mystic and me moving here, and my ridiculous adventures," she says. "I discuss Amelia Earhart a lot since she was married in Noank…(she) used her fame to promote women's rights; my cause is a mother's right to know how to protect her unborn child from congenital CMV."

Portrait of Elizabeth

Despite the insensitive stares the family endured in reaction to Elizabeth's appearance, despite the anxiety and exhaustion of her caretaking, Saunders' memories of her daughter are joyful.

"A healthy daughter wouldn't have wanted to be seen with us and Elizabeth was always happy to be with us, out with her parents as a 13-year-old," Saunders recalls. "We didn't have to worry about boyfriends with her! She was a sweet, happy little kid. Jim would come home from a hard day and he would hold her and she would just look up at him and smile. He just loved her immediately. He was the strong one at first. He'd say, 'Elizabeth doesn't mind being so severely disabled — why should I care?'"

One of Saunders' fondest memories is driving around with Elizabeth in her red convertible with the top down.

"I bought her little red sunglasses because they matched my car. She was my sidekick. She was just so fun to take out and so appreciated every little thing you did for her. Mentally she was about three months old."

And, Saunders stresses, "One of the really cool things about Elizabeth is that because of her I met phenomenal people who would reach out to me from the bottoms of their souls."

Continuing

the mission

Right after Elizabeth died, Saunders thought, "'What can I do to make sure my loved one didn't die in vain?' When she was alive, I was too busy keeping her alive and comfortable to really get involved in the fight."

She says there are a bunch of moms nationwide who are active in the cause of CMV prevention from all different angles — hers is as a writer and speaker.

Although Saunders says very little has changed yet, it was a big thrill for her when a bill passed in Utah this past July that directs the state's health department to establish a program to educate the public about the dangers of CMV and its prevention. The goal is to get every state in the country to pass such a bill to educate the public. Saunders' focus is here in Connecticut.

CMV activism has been a huge component of her healing process, she says. She told Elizabeth's story at the first international CMV conference in this country in 2008 in Atlanta.

"A scientist who could barely speak English came up to me and said, "You inspired me to try and find a vaccine," Saunders says. "It was a big thrill for me (as) this is the only thing I can do for Elizabeth now."

Visit Saunders' website for information about her books and speaking engagements: www.authorlisasaunders.com. For the facts on CMV, visit the Centers for Disease Control and Prevention website: www.cdc.gov/cmv

Lisa, Jackie, Elizabeth and Jim Saunders are
shown in a family photo from the early 1990s.
Lisa, Jackie, Elizabeth and Jim Saunders are shown in a family photo from the early 1990s.
Lisa and Elizabeth enjoy a snuggle in the kitchen.
Lisa and Elizabeth enjoy a snuggle in the kitchen.

Preventing infection

Here are a few simple steps pregnant women can take to avoid exposure to bodily fluids that might contain CMV:

• Wash your hands often with soap and water for 15-20 seconds, especially after changing diapers, feeding a young child, wiping a young child's nose or mouth or handling children's toys

• Do not share food, drinks, eating utensils or a toothbrush

used by young children

• Do not put a child's pacifier in your mouth to 'clean' it

• Avoid contact with saliva when kissing a child

• Clean any surfaces that come into contact with urine or saliva

— From www.cdc.gov

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