My brother’s clefts: When birth defects aren’t defects – Infancy to surgery.

I didn’t think of my brother Karl’s cleft lip and cleft palate as birth defects or disabilities.  

These birth defects a disability, or not?

Guest blog by Barbara Schonborn**

Part One: From Infancy to early surgeries.

A Princess Usurped.

Until I was almost two years old, my life was idyllic. My mother read to me often—I sitting in her lap, a book in mine. She sewed clothes for me, cooked for my father and me, and took me to the Sunday nursery at our church in Boise, Idaho. I knew how to smile and pose whenever my father pointed his camera at me. One photo in my collection shows me in a diaper and tee shirt, standing confidently and grinning, one hand raised, the other hand grasping the railing of my crib.

After Thanksgiving, my mother went to the hospital for a few days and brought home my first little brother. I expected a new playmate, but he couldn’t play blocks on the floor with me, or do anything else except sleep. How disappointing!

Day after day, when I awoke from my afternoon nap and walked into the living room, I found my mother sitting on the sofa, the tiny baby lying in her lap, while she fed him milk with an eye dropper. Karl had a gap extending from his nose through his upper lip, and the roof of his mouth was open. He couldn’t suck and nurse like a normal infant.

Mother squeezed the eye dropper carefully, placing a few drops of milk far back on his tongue, so he could clench his throat muscles and swallow. Gagging was a risk. He spit up a lot of milk.

After we became adults, Mother told us she assiduously fed Karl to raise his weight from six pounds six ounces at birth to ten pounds, when he would be eligible for surgery to close his cleft lip and palate. Mother’s and Karl’s joint efforts to deliver, swallow, and digest enough milk to gain those six pounds took twelve hours of every twenty-four. She must have been exhausted.

My second birthday was nine days after Karl was born. It didn’t take long for me, the displaced big sister, to resent the invader who occupied the intimate place on our mother’s lap that had been mine. Determined to stay close, I snuggled next to her with my book on my lap. 

As a compassionate adult now, I imagine our mother’s challenges in trying to feed Karl with the dropper, deal with his spitting up, and read to me—let alone all the regular labors of a stay-at-home mom without the automated appliances we take for granted now. Besides this interminable work, she corresponded by mail with her mother, in Longview, Washington, and with a surgeon and hospital in Seattle, making the plans for Karl’s surgeries.

Our father was away from home for several weeks during Karl’s infancy. World War II was underway, and Dad had to attend US Navy boot camp in San Diego. He missed one of Karl’s early surgeries. A talkative toddler, I was Mother’s constant companion; my vocabulary and insights were limited, though, and she said we got tired of each other’s company during those short winter days and long, dark evenings in Idaho.

Little Lady in Waiting

In the early months of Karl’s life, I developed my life-long habit of attending to others’ needs. Mother sent me to the bedroom to get a diaper for a bib or face towel for him, or to get a tissue to wipe his runny nose. As weary as she was, she praised me as her good girl, her helper.

I re-shelved each book we read, and brought out the next book. I began to feel responsible for Karl’s and Mother’s well-being, even as I learned to stifle my desires for the warmth of her body, her arms around me, and her kisses on the top of my head. When I couldn’t hold back tears of envy at Karl’s exalted position on her lap, Mother likely wept, too, in frustration. She was a sensitive, artistic soul, who understood other people’s perspectives; her double, conflicting responsibility to daughter and son left her little time or energy to attend her own needs.

The neighbor kids wanted to meet the baby at our house, but Mother was reluctant to introduce Karl. She was afraid the children would worry about the white tape. Before surgery, Karl’s doctor had advised her to keep a strip of adhesive tape under his nose. The tape pulled the sides of the cleft together, thus stretching the muscles and skin, in order to make it easier for the surgeon to stitch the gap closed.

When Mother did invite the neighbors to see Karl, they peered at him as they circled the bassinet in the living room. One child exclaimed, “He’s got black hair!” Karl’s headful of straight, newborn hair was indeed noticeably darker than our mother’s light-brown waves, and my fine, dark-brown hair. No child said a word about the white tape under Karl’s tiny nose or about his birth defects. 

I don’t remember Karl’s and our mother’s absence for his first surgery, when he was about 10 months old, but he could eat and drink normally after his his split lip and the roof of his mouth were closed. As we grew, played, and learned to talk, I always understood his speech, even though he pronounced words with a nasal sound. His air stream from his vocal cords came out of his nose, instead of his mouth. 

**Barbara’s Bio.

Barbara Schonborn and Karl both chose to be educators as their life’s work. She also has written and edited training materials and other texts in high-tech businesses. In Karl’s memoir, pictured below, Barbara’s name is Gayle.

Go here for more family pics, including ones showing my brother’s birth defects.

And go here for excerpts from the book. You can order there or use the right sidebar buttons for Amazon or Barnes & Noble. 

To learn about CLEFT HEART: Chasing Normal, click the Amazon or Barnes & Noble buttons in the margins. Or click the image of the book cover. My coming-of-age memoir has intertwining love stories, mystery, tragedy, and triumph.