Why did my daughter die?

by Lisa Saunders

Why did my daughter die? Because I didn't know about congenital CMV (cytomegalovirus) prevention.

Today is Congenital CMV Awareness Day and June is Congenital CMV Awareness Month. Perhaps this new attempt at a prevention message will help other children enjoy a healthier childhood.

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

The neonatologist declared, "Your daughter has profound microcephaly — her 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) — a virus that may have no symptoms for the mother.

The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome. 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. Hands must be washed after wiping runny noses, diaper changes, etc. 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 ignorance 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.

“My life is over,” I thought. I asked God to heal her instantly, but He didn’t. So, I begged him to kill me and prayed to be crushed to death in an earthquake. I just couldn’t handle raising such an afflicted child, period.

Thankfully my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she has been born into.” He was just like Charlie Brown with that pathetic Christmas tree.

It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish. Life did become good again--but it took a lot of help from Jim, family, friends, the Book of Psalms, and a couple of Valium! When Elizabeth finally figured out how to look into my eyes, she smiled—and I was hooked.

On Elizaeth's 16th birthday, I awoke feeling so proud of her. How hard she fought to remain with us in the land of the living–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 big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy young lady with a love of adventure-- long car rides being one of her favorites. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children.

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. We called 911.”

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 Elizabeth did.” I knew he was right. No one adored us as Elizabeth did.

Thank you for reading about Elizabeth.

Sincerely,

Lisa Saunders, Mystic, CT

P.S. In an effort to record the fun I had raising Elizabeth beside her tomboy sister, Jackie, I wrote the book, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It is the unusual story of how a homeless, old dog found his way to Elizabeth's couch. The book concludes with tips for preventing congenital CMV from the country’s leading CMV experts and gives information on emerging treatments for women who find they have contracted CMV while pregnant. Available through the National Congenital Disease Registry, “Anything But a Dog!” raises funds for congenital CMV parent support and research if purchased through: http://www.unlimitedpublishing.com/cmv/

To see photos of Elizabeth growing up, please visit my website at: http://www.authorlisasaunders.com/