Four year-old Aruzhan (meaning “beautiful soul”) lives in Kazakhstan, where she is one of 66,000 children impacted by disability and one of 30,000 children living in state care.
Aruzhan has cerebral palsy; she is blind and doesn’t speak. But she is a favorite of her caregiver. When we arrived at her baby house, her caregiver met us at the door and thrust Aruzhan into our arms, saying she was desperate for help in feeding her. Aruzhan is very small for her age and, underneath her many layers of clothing, very thin.
Aruzhan’s caregiver said she couldn’t swallow and the only way they could get food into her was by laying her on her back – the way so many children with disabilities are fed in orphanages around the world. Her caregivers would wait until her mouth opened – then dump the food in and let gravity do the work. Unfortunately, gravity caused the food to go all too often into her lungs, where it caused chronic respiratory infection. Aruzhan’s breathing could be heard from across the room, a wet, gurgling sound.
Children with chronic respiratory infections – like Aruzhan – use all of their energy to breathe and are at higher risk for death during the cold and flu season. Luckily, though, prevention can be as simple as a few small changes to feeding techniques.
We worked with Aruzhan and her caregiver for just 30 minutes. Although the caregiver insisted that Aruzhan couldn’t sit up, we showed her how to position her appropriately, using a stroller already in the room.
It was the first time Aruzhan had ever sat up.
We showed the caregivers how to support Aruzhan’s lips and jaws so she could drink safely out of a cup, and how to use a spoon in such a way that her swallow reflex was triggered, causing the food to go into her stomach and not her lungs.
At the end of the meal, the raspy breathing was gone. Her caregivers were inspired! They couldn’t wait to use their new knowledge at her next meal. And they noted excitedly that she could interact more, now that she could sit up, and she could use her energy for learning instead of breathing.
Aruzhan’s caregiver has gone on to become the lead feeding trainer in her baby house, where she can implement these new, safer feeding techniques more broadly to reach the children most at risk.
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