My memories of Karuna’s first year of life are filled with joy. My younger son Sohaum squeezed her cheeks while saying gleefully, “You’re just mine, you’re all mine,” as she giggled and wiggled on the shaggy carpet next to her crib. My older son Abhay carefully held both her hands in our living room as she tried to take her first steps and then let her go to give her a chance to walk by herself. And my wife, Amisha, who had never seemed so tired, had also never looked so full of unabashed love.
But a few months after her first birthday, Karuna began refusing meals. First, she refused the pureed vegetables, then the fruits. She was a bottomless pit for olives and loved rice and daal, but beyond that, she just didn’t eat much. She’s just a picky eater, I thought.
We started consulting with a nutritionist to see if we could broaden her food preferences and started her on PediaSure to supplement her intake. She’ll be okay, I thought. She’ll catch up. But she got worse.
By September 2019, she was sleeping more and tired all the time. We started getting calls from her day care center. While the other children played with blocks and crayons, sitting at their tables, Karuna just wanted to lie on a mat in the corner of the room.
A few days before Karuna’s second birthday, Amisha and I noticed swelling around both of her eyes and fluid accumulating in her eyelids. She was crying, irritable, and breathing rapidly, but my parents had flown in from North Carolina to be with us for her second birthday. They looked so pleased, so melty with love for their first granddaughter, and so we lit the candles and cut the cake.
But it’s a bias, a logical fallacy, a cognitive blind spot.
Amisha and Karuna drove off while I went to pick up the boys. I had just arrived at their school when I got the call.
My own heart skipped and lurched. I had spent my medical career caring for patients with heart disease and other medical illnesses. I knew what that meant. Our daughter had heart failure.
Crises eventually reach what researchers call a moment of liminality (from the Latin limen, meaning “threshold”)—the threshold between what was and what must now become.
Karuna moved into Boston Children’s Hospital’s pediatric ICU, where Amisha and I spent countless sleepless nights. Those days went by in a blur, interrupted by sharp moments of urgency and clarity. I talked cold science with doctors. I held Amisha while nurses put a breathing tube down Karuna’s throat and trachea. I gripped my father when he took me in his arms and held me while sobs shook my chest.
The acute crisis had stabilized, but she was on nearly a dozen medications to support her heart and still didn’t have a clear diagnosis. Her heart cells had been infected with parvovirus B19, the virus that more commonly causes Fifth Disease. At the same time, genetic testing revealed a variation in her genetic code, though it was unclear whether it had caused her illness.
Or she might make a full recovery, though that could take months or years. In the uncertainty, we were meant, somehow, to go back to life as usual.
“So she’s okay now?” I asked. “We don’t need to come back?”
“We still don’t know.”
Actively reflecting on her condition, I find I cherish the small moments with Karuna—watching her play with her brothers or teasing her grandparents—precisely because of the uncertainty inherent in it.
Adapted from SAFER—A Playbook: Turning Fear into Action and Crisis into Community by Raj Panjabi, MD and reprinted with permission from HarperOne, an imprint of HarperCollins Publishers. Copyright 2026.
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