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Loving My Christmas Girl Born Disabled by Congenital CMV

Expecting our second child, due to arrive on Christmas Eve 1989, was a delightful experience. What a Christmas present! But the moment Elizabeth was born on December 18, I felt a pang of fear. My immediate thought was, “Her head looks so small–so misshapen.” Before she was twelve hours old, I found out why.

When the neonatologist walked into my room the next morning, he said, “Your daughter has profound microcephaly–her brain is severely damaged 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 can have no symptoms for the mother, known as a “silent virus”, or it can present with mild to severe flu-like symptoms.

The Centers for Disease Control and Prevention (CDC) states that approximately 8,000 babies a year are born with or develop permanent disabilities due to congenital CMV. It is the #1 viral cause of birth defects — more common than Down syndrome.

How and why did I catch this virus that I barely heard about? I read the CMV literature. It stated that women who care for young children are at a higher risk of catching it because it is often shed in their saliva and urine. Pregnant women should avoid kissing them on the mouth and sharing cloths and utensils with them. Hands should be thoroughly washed, especially after wiping a runny nose, diaper changes and picking up toys that have been in a toddler’s mouth.

While I was pregnant with Elizabeth, I not only had a little one of my own, Jackie, but also ran a licensed nursery in my home. I felt sick for what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may experience gradual hearing loss, suffer some visual impairment or struggle with minor learning disabilities. But Elizabeth’s case was not mild.

“My life is over,” I thought. I asked God to heal her immediately, but since He didn’t, I begged him to kill me and prayed to be crushed to death in an earthquake or struck by lightning. I just couldn’t stand such a distressed child, period. Although children are supposed to be a blessing, I felt far from blessed—I felt overwhelmed.

Fortunately 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 was born into.” He was just like Charlie Brown with that pathetic Christmas tree.

“Oh God,” I prayed, “please help me love Elizabeth too.”

At first, whenever I looked at Elizabeth, my heart broke again. I couldn’t see past her prognosis. The forecast became more human than Elizabeth herself–it was a living thing constantly tormenting me.

If I was ever going to move forward and find happiness again, I knew I had to stop dwelling on the unanswerable questions that kept popping into my head, like, “What will she be like in the future?”; “Why didn’t my OB/GYN warn me about this?” and “Why would God let me catch CMV?”

In those days after the birth of Elizabeth, I could only rock her and read the book of Psalms. Before Elizabeth was born, I really couldn’t relate to the Psalmists. I thought, “Wow, those people are really depressed!” Now, I found comfort in their bitter questions, such as: “How long must I bear pain in my soul, and have sorrow all the day long?” Knowing that I wasn’t the only one who despaired of life made me feel less alone.

It took Elizabeth a few months to finally figure out where my face was, but then one day she looked straight into my eyes and smiled – we finally connected! I gradually began to think: “If she doesn’t care about the fact that she is extremely mentally retarded, and barring a miracle will never walk or talk, why should I be so upset?” Maybe it was the sedative Valium talking, but that thought stuck with me, even when I no longer needed “mother’s little helping hands” to get me out of bed and into the shower.

Eventually I stopped focusing on Elizabeth’s disabilities, but on her abilities—her appreciation for being alive for one. Although she couldn’t hold her head up or move her clenched fists to reach for a toy, she could hear and see — at least a little. She couldn’t sit alone, much less crawl, but she could sit for hours contentedly tucked in my lap and study my face with her big blue eyes framed by long dark lashes. When I smiled at her, she returned an ear-to-ear grin, letting me know that my happiness with her was all she needed to be content in this world.

It took about a year, but I finally stopped praying that a nuclear bomb would fall on my house so I could escape my overwhelming anxiety over Elizabeth’s condition. Life became good again. We were finally able to move forward as a happy, “normal” family. Even strangers played a part in lifting my spirits. One afternoon, struggling with Elizabeth’s wheelchair through the fairgrounds of an upstate New York county fair, I felt myself sinking into depression because kids were looking at my little girl who couldn’t even hold her head up. “She looks funny,” children said aloud to their embarrassed parents. In the middle of my dark thoughts, a heavily tattooed carnival man who looked like he’d been drinking for years ran from behind his gaming booth and came right up to me. My alarm melted into tears of gratitude as he handed me a large, brown teddy bear from his stash of prizes and said, “I want your daughter to have this.”

One lingering nagging problem, however, began the day my older daughter, Jackie, asked, “Can I have a dog?”

I cracked up. The dreaded day was here – all kids inevitably ask for one. And why wouldn’t they? Movie dogs like Lassie drag you from burning buildings and keep you warm when you’re lost in a blizzard. But when we’re adults, we learn the truth about them: they urinate on your new wall-to-wall carpets, dig holes in your leather recliners to hide their rawhide bones, and bite your neighbor’s kid.

“No, you can’t have a dog,” I said, preparing for the age-old argument. “We just can’t risk a dog around your sister.” I hated to admit it. I didn’t want her to blame Elizabeth for being so fragile. But taking care of Elizabeth was enough work without adding a dog that could playfully nibble on her.

I know! I’ll give Jackie the “lip-smashing story.” That will convince her that we can’t have a dog around her sister.

“When I was 13,” I began, “I persuaded grandma and grandpa to let me have a Weimaraner. His name was Bogie—short for Humphrey Bogart—and he was a pincher. One day, my two-year-old cousin Suzannah. was playing on the floor below the table with a Popsicle stick in the boo. Bogie snapped at the stick and bit his lip off! My grandmother took the lip off the carpet and wrapped it in a paper napkin to take to the hospital. But it couldn’t be sewn back on. A surgeon fixed Suzannah’s visa, but when we got home, my mother loaded Bogie into the back seat of the car and took him to the vet. I never saw him again. He took the ‘long walk.'” as they say in the movie Lady and the Tramp.”

I paused so Jackie could let the horror of the incident sink in.

But she only wanted to know: “Where is Suzannah’s lip now?”

“God, I don’t know! The last time I saw her lip it was stuck to the napkin, all shriveled and mummified on my grandmother’s bookshelf. But that’s beside the point; don’t you see, like a dangerous dog could. for your sister? She can’t talk—how would she call us if she was in another room and the dog was bothering her?”

If there was a Lassie-like dog out there, Elizabeth more than anyone could use one, but I just couldn’t take that kind of chance on an animal that could live up to 13 years.

After many tears and arguments, I finally made Jackie a promise: “If God brings one to our door, then you can have it. How’s that?”

“Really?” she asked, a smile spreading across her face.

“If one shows up at our door, I’ll assume it’s a sign from God, that it’s a special dog who will be gentle around Elizabeth.”

“Mommy, I love you!” She threw her arms around my neck and kissed my cheek.

I felt bad – all I really gave her was a little hope. Jackie actually thought a dog was going to show up.

Maybe there was a compromise to a dog? There must be a pet out there that wouldn’t hurt Elizabeth. A goldfish? I mean barring a freak accident of it flipping out of its bowl and hitting Elizabeth in the face, the thing couldn’t possibly hurt her. A hamster? They run around and around in a hamster wheel with no clue that they aren’t going anywhere. Maybe Elizabeth could enjoy a hamster too. She was unable to hold it, but she might find it amusing to watch it run in her wheel.

Maybe a spinning hamster would make Jackie forget about a dog, the way my parents thought getting me Bogie would help me forget about boys…

Of course what happens next is a completely different story!

Lisa Saunders

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