My daughter's life was in danger — and the doctors couldn't figure out why

Shiri, my youngest, is an adorable four-year-old girl with Down syndrome. The first year and a half of her life was a roller coaster ride. She couldn’t nurse, but she reacted badly to almost every formula we tried. Her digestive system was terribly sensitive; she’d suffer from bouts of terrible diarrhea and then painful constipation. She also had reflux.

She was around four months old when Covid hit, which obviously complicated matters. By the time she was eight months old, she weighed only eight pounds. Things were getting desperate.

We saw a GI who put her on stronger reflux medication and suggested I start thickening her formula with oatmeal to help with the reflux and promote weight gain.

But when I tried this, the formula entered Shiri’s lungs and she aspirated, which was terrifying. As per instructions, we weren’t feeding her with a bottle, but spoon-feeding instead. Still, Shiri would start coughing and choking with each swallow of this thickened formula. Obviously, this wasn’t the answer.

By the time Shiri was 18 months old, she was severely limited in her feeding choices. She was very picky, perhaps sensory, and was basically receiving all her sustenance from formula. I tried pureeing veggies and cooked chicken from the soup, but she wouldn’t touch it.

The doctor suggested another formula switch, this time from EleCare, which had been her primary formula, to Kate Farms Pediatric Peptide Formula. (The peptide part was important, as it meant the formula was partially pre-digested, something that we found out later was essential for her.) This new formula had 30 calories per ounce as opposed to 20, which was also good, as each calorie was essential for Shiri. Yet because of her past history, we decided to introduce the Kate Farms very slowly, as slow as half an ounce per day in the beginning.

This arduous process of trying to get her sufficient nutrients to sustain her left us all very tense.

But despite all these efforts, it didn’t seem like the Kate Farms was agreeing with her. She still had constant, foul-smelling diarrhea that wouldn’t relent.