The large room was lined with beds, each a home base for a mother and her child as their waited their turn to have surgery and graduate out of the ICU. Mothers whiled away their time talking and fussing over their babies.
I made my way to Salima’s bed, and sat on the edge beside her mother. “Salima is beautiful.”
“Really? Come with me.” Salima’s mother hopped off the bed and waved for me to follow.
She was dressed in a long, black abaya that brushed the floor, and took a moment to quickly fix her face veils into place before we we walked out of the ward. We made our way down the long hallway and out to the open area where the fathers, leaning against tile walls, spent their time waiting.
She motioned her husband over and we stood in a little circle facing each other. Salima’s mother, with a big grin on her face, told him, “She says Salima is beautiful!” Without missing a beat, her husband leaned in and asked me, “Who does she look more like? Her mother or me?”
Salima was easy to fall in love with—doe eyes, a darting tongue, and hands that clasped in the sweetest way. It was also easy to fall in love with her because we got to spend so much time with her.
Children with Down syndrome, like Salima, often have complicated heart defects. Their recoveries take longer. There are often setbacks.
For parents who adore their children, these setbacks are especially hard to take. They watch other children recover quickly—sometimes within a day—and leave the ICU, while their own children stay. It’s hard.
Long recovery times can complicate ICU management. The number of surgeries performed is directly related to the capacity of the ICU—if there aren’t open beds and the corresponding staff available to receive children after their surgery, then the surgery can’t be performed. As a result, other children have to wait longer for their surgeries.
In many parts of the world, children with Down syndrome have a hard time getting surgery at all. They are often deemed unworthy of scarce resources.
Our medical team intentionally includes children with Down syndrome, like Salima, in every surgical mission. We know the value of these children—both to their adoring families, as well as the wider community.
Before she was discharged, Karen—one of Salima’s nurses—got a photo of the two of them together. Over the course of her hospital stay, Salima’s hair filled in, growing longer and darker. She grew bigger and more active. More of her personality began shining through—sucking two fingers instead of her thumb, lots of busy squirming when she felt well, and quiet little bird-like squawks when she didn’t.
Children like Salima are NOT a waste of resources. Their lives matter. Their world is worth remaking.