Tuesday, November 22, 2011

Those Who Can't Be Home for Christmas

Elizabeth and I when she was about three
While sipping coffee and paying bills at Starbucks in Mystic, CT, tears sprang when I heard the song that gets me every year--"I'll Be Home For Christmas."

As usual, I cried for the people I miss, but six years ago, I remember crying in thankfulness that our younger daughter, Elizabeth, managed to be home for yet another Christmas.

Expecting Elizabeth, due to arrive Christmas Eve of 1989, had been an exciting experience. But the moment she was born on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small--so deformed.

The neonatologist said, "Your daughter's brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Why hadn’t my OB/GYN warned me about this?

While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”--just like Charlie Brown with that pathetic Christmas tree.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers, and could not speak or hold up her head, Elizabeth was very happy and loved going for long car rides--especially to look at Christmas lights. She also enjoyed school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left.

At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone.

While holding Elizabeth on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”

Now, as I prepare to celebrate my sixth Christmas without her, it is with some heartache that I bring down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, old rescue dog Riley, and watch us decorate. Now, I perform one new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say if she could, “God bless us, everyone!”

Now, I only visit with Elizabeth in my dreams, but to feel her presence on a more continuous basis, I share her life with others. After speaking about her at the first international Congenital CMV conference held at the Centers for Disease Control in Prevention (CDC) in Atlanta, GA, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"

Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” I hope to reach a general audience by sharing the unusual account of how a big, old homeless dog found his way to Elizabeth's couch while including CMV prevention and treatment tips from the country’s leading CMV experts. The first chapter is available for viewing in Amazon’s e-book version at: www.amazon.com/dp/B005GRAE0I
When I asked the CDC what else I could do to help raise a CMV prevention message, I was told about a woman who might be able to advise me--Marti Perhach. Marti, a Pomona, CA, mother, lost her own daughter Rose in 1998, and along with other grieving parents, is successfully waging a campaign to raise awareness and prevent Group B Strep (GBS) disease in babies before birth through early infancy. When I told Marti that I thought it took guts to post a photo of her dead daughter on her website, she said, "But that is the only picture I have of Rose."

According to Marti, "Rose had a healthy fetal heartbeat moments before the OB stripped my membranes even though I had cultured positive for GBS. Rose was stillborn the next morning as GBS had infected her lungs and amniotic fluid. Some experts believe that invasive procedures push GBS closer to the baby where it is known to cross even intact membranes."

Marti believes that if the public works together, we can inspire a change in awareness and OB/GYN protocol that will save children from congenital CMV, the #1 viral cause of birth defects, as well as several other infections the CDC wishes to prevent.*

To help children come home for Christmas, hand out the CDC's fact sheet on preventing infections during pregnancy available at: http://www.cdc.gov/ncbddd/pregnancy_gateway/infections.html

*End Note:

Anything But a Dog! raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry link at: http://www.unlimitedpublishing.com/cmv/

Now, due largely due to the collective efforts of Marti and many other parents through the Jesse Cause Foundation and the Group B Strep Association, OB/GYN's routinely test their patients for this bacteria prior to giving birth. Because much works still needs to be done to prevent GBS disease in babies before birth through early infancy, Marti co-founded Group B Strep International: http://www.groupbstrepinternational.org/

Janelle Greenlee of Sunnyvale, California, is another mother working hard to prevent infection –related disabilities in future children. The mother of twin sisters, Riley and Rachel, who were born disabled because Janelle caught cytomegalovirus (CMV), said, "We hope that women, families and friends will become familiar with the CMV virus and will take vigilant steps to prevent infection. We believe that it is better for women and their families to learn about CMV well prior to pregnancy so that they will never have to learn of it when it is too late." Janelle founded Stop CMV - The CMV Action Network: www.stopcmv.org