Abstract

Pediatric patients with genetic disorders are an often overlooked subpopulation, though they pose serious nutritional and medical challenges. Many genetic disorders are prevalent in the UAE and in the larger Middle Eastern region due to cultural traditions of intermarriage. Spinal Muscular Atrophy (SMA), holoprosencephaly and chromosome 9 monosomy are just some of the disorders that lead to the need for ventilation and enteral feedings. These patients uniquely prevail in the Arabian Gulf region due to stricter laws that allow them to survive on ventilation machines, as compared to the Western world, where they would otherwise not be reliant on mechanical ventilation, thus characterizing them with shorter lifespans. This leads to limited research published on the appropriate management of such patients and challenges to medical professionals in the region. This presentation aims to discuss the various nutritional challenges posed by such patients, including failure to thrive and the inappropriate use of standardized growth charts and energy formulas.

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