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Those Who Can't Be Home For Christmas

Word Of Mouth Can Help Bring Children Home For Christmas.

While sipping coffee and paying bills at in Mystic, tears formed 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, G.A., scientists from all over the world approached me 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?”

Until OB/GYNs make CMV prevention a standard practice of care, I try to reach the general public by sharing the fun Elizabeth had growing up beside her older, tomboy sister in my memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” In this unusual story about how a homeless, old dog found his way to Elizabeth's couch, I include CMV prevention tips from the country’s leading CMV experts and along with emerging treatments. 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 future children come home for Christmas, share the CDC’s handout on preventing infections during pregnancy. 

...
*End Note:

“Anything But a Dog!”, available through the National Congenital Disease Registry,  raises funds for congenital CMV parent support and research if purchased through their link here.

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


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

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Tom Santos December 04, 2011 at 02:09 PM
Inspiring and informational article concerning birth defects and the love for a child with defects which eventually took her life. I congratulate you, Lisa, for your perseverance and ability to tell your story.
Marti Perhach December 04, 2011 at 04:49 PM
Beautifully written, Lisa! Will think of Elizabeth and Rose celebrating Christmas in heaven together :). And thank you for writing this article so future parents can be informed and be able to have their children home for Christmas :)!
Karen December 04, 2011 at 08:10 PM
I know most of your story too well. My family is living with the daily reminder of a daughter born with CMV. What I would give for all women to have the information you, I and so many other women did not have while pregnant. We are celebrating our 16th Christmas with our daughter, but we also know how precious each day is with our kiddos. Thank you for sharing your story and doing all the work you do to help raise awareness.
Karen December 04, 2011 at 08:12 PM
www.stopcmv.org A GREAT resource for more stories like Elizabeth's and for a massive amount of information on CMV.
PG December 05, 2011 at 02:09 AM
What an important message to share, and you have expressed it so beautifully through Elizabeth's story. I admire your continued efforts to raise awareness for the benefit of others. Thank you for sharing this.
Jackie Tortora December 05, 2011 at 03:23 PM
What an inspiring story. I would recommend every woman who is planning to have children to read the CDC's tips.
Teresa M. Norris December 07, 2011 at 08:58 PM
Lisa - I always marvel at your brave and generous heart when you share this story and offer this vital information to others. Your "Christmas Angel" will always be with you.
Lisa Saunders December 08, 2011 at 01:20 PM
I just read NIH is doing a study to see if CMV antibodies can prevent disabilities. To see photos of Elizabth with her rescue dog, and learn more about CMV, watch USA News 9 clip: http://www.wusa9.com/video/default.aspx?bctid=34235723001

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