Friday, February 8, 2008

Elizabeth Saunders: Forever Sweet Sixteen




by Elizabeth's mother, Lisa Saunders

The moment Elizabeth was born, I felt a stab of fear. I knew there was something very wrong. My immediate thought was "Her head looks so small — so deformed."The neonatologist entered my hospital room and 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).

How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it, as preschoolers are the majority of carriers. The virus is spread through bodily fluids such as saliva and urine. Why hadn’t my ob/gyn warned me? 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 and cared for infants in Sunday school. 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. “How could God let this happen to us?” I prayed God would heal Elizabeth. When He didn’t do it immediately, I begged him to kill me--through an earthquake (pretty rare in the D.C. area), through a lightning strike, or perhaps a drive-by shooting. I just couldn’t handle raising a child like that. Period.

Since God wouldn’t kill me, and didn’t seem to be healing Elizabeth, I fervently prayed I was love her. It was just so painful to see how abnormal she was—the fear over her future overwhelmed me. I cringed hearing those well-meaning words, “God must really love you to give you a child like that,” or “You must be special for Him to trust his child with you.” I have heard of mothers killing their handicapped children or being checked into a mental clinic. Many fathers leave the family because they can’t even bear to look at their child.

What eventually helped me recover from deep depression was my husband Jim’s love and acceptance of Elizabeth, friends who went out of their way to help me with her care, and reading Psalms about God’s people who cried out to Him in their suffering. I didn’t feel so alone in my grief anymore. My love for Elizabeth gradually grew and I thoroughly delighted in her love for us. She was perfectly content to stare into my eyes and smile for hours. Other than the times her disabilities caused her to suffer, I was happy and no longer dwelled on the fact that she was stuck at a three-month developmental level.

Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us, surviving several bouts with pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd 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 still a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. She was even a contributing member of society—shortly after her birthday she donated 10” of her long beautiful hair to an organization that makes wigs for sick children. She happily let me cut her hair off, thinking it funny how hard I worked to cut evenly while holding her head up.

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping my short-haired girl 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."

We met her ambulance at the hospital. Although the medical staff continued to work on her, she was already gone. After they unhooked her from the life support, my husband and I took turns holding her. While holding Elizabeth on his lap, Jim 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 much as Elizabeth.

How could we leave her at the hospital and just walk out? She didn’t really look dead, merely asleep. After about three hours, however, Elizabeth’s eyes began to sink—a sign that her soul had truly left her body. We tried to imagine that she was enjoying Heaven in a new body—a much better one. And now Jim and I were left without her—we were alone.

We placed her back on the gurney and pulled the blanket up to her to chin, as if we were putting her to bed for the night. With a final kiss goodbye and one more glance back as we paused at the exit of her room, we left.

Elizabeth’s grave marker is a sandy-red, heart-shaped stone. To remind us where Elizabeth is and what she is doing, we had the following verses etched on the back: “I will dwell in the house of the Lord forever” (Psalm 23:6) “Then the lame man will leap like a deer, and the tongue of the mute will sing” (Isaiah 35:6).

It has two years since we lost Elizabeth. At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her — never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she be cold or sick. She has received what was promised to her ancestors who have gone before her: “I will gather you to your fathers and you shall be gathered to your grave in peace.” (2 Chron 34:28).

For the remainder of my days Elizabeth will be forever "Sweet Sixteen." Today, my sorrow is gradually being replaced by a passion to prevent others from going through what Elizabeth did. I have returned to the CMV research and literature and have learned there is still no vaccine, but there are new treatments emerging. What upsets me the most, however, is that women of childbearing age are still not being warned about the infection, how to avoid it and how treat it.

According to Drs. Cannon and Davis in their article, "Washing Our Hands Of The Congenital Cytomegalovirus Disease Epidemic,” http://www.biomedcentral.com/1471-2458/5/70, “The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.” Yet congenital CMV results in more disabilities than Down syndrome. Dr. Schmid of the CDC wrote to me: "The overwhelming majority of cases are not evident at the time of birth...the development of symptoms, such as neurosensory hearing loss and mental retardation, may not manifest for a year or longer."

One mother wrote to me: “It seems kind of silly that they tell you not to change the cat litter [to avoid toxoplasmis] but forget to tell you not to change the baby.” Another mother wrote that had she been warned about congenital CMV, “I would have been insane about washing my hands, carrying around hand sanitizer 100 % of the time.”

According to the CDC, there are steps women can take to reduce the risk of CMV infection during pregnancy:

Do not kiss young children under the age of 5 or 6 on the mouth or cheek. Instead, kiss them on the head or give them a big hug.
Do not share food, drinks or utensils with young children.
Wash hands often with soap and water, especially after changing diapers.
If working in a daycare center, try to avoid caring for children under the age of 2 1/2.
For more information, visit www.cdc.gov/cmv. One way you can help reduce the spread of CMV is by printing the brochure found on the CDC Web site and asking your doctors to post it in their waiting rooms. See
Brochure on CMV ( PDF)- In English- en Español (In Spanish)
To meet other children born with congenital CMV, see cmv-poster 1.61mb.jpg format
Lisa Saunders, of Suffern, NY, is a freelance writer http://www.authorlisasaunders.com/. She can be reached at saundersbooks@aol.com




Lisa Saunders’ daughter Elizabeth was born with congenital CMV in 1989. “The moment Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, ‘If she lives, she will never roll over, sit up, or feed herself.’ He was right. We spent the next 16 years making life-and-death decisions about drugs, surgeries, etc., sometimes without support from the medical community. I was shocked to discover that many doctors think congenital CMV infection is really rare! For example, my OB/GYN had never warned me about the risk of doing daycare for preschoolers in my home. Our best allies were the pediatricians, who helped us wade through the suggestions of specialists to find ways to keep our daughter comfortable. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Jim cried, ‘No one is ever going to look at me again the way Elizabeth did.’ I don’t want that to be the cry of any other parent because no one warned them about CMV.” Lisa Saunders (saundersbooks@aol.com) is a writer for the State University of New York at Rockland and the author of short stories and books. Photo of Elizabeth with her family:http://web.ecomplanet.com/SAUN6703/ServerContent/MyCustomImages/SAUN6703CustomImage0368759.jpg

1 comment:

sarah said...

As with you, and thousands of others, I am amazed at how little we (we pregnant mothers) know about CMV. A dear friend just lost her baby due to CMV. It is heart breaking to see what it in it's most extreme forms can do.

I am sorry for your loss - but I hope that the word about CMV will be spread so that others losses can be prevented.

Sarah