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Erring On The Side Of Life: Children With Rare Trisomy Conditions, Medical Interventions And Quality Of Life, Deborah Bruns
Erring On The Side Of Life: Children With Rare Trisomy Conditions, Medical Interventions And Quality Of Life, Deborah Bruns
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he prevailing viewpoint on children with rare trisomy conditions such as trisomy 18 (t18) and trisomy 13 (t13) is almost uniformly negative. Yet, case studies offer information about long-term survivors. What is missing in the discussion is an unbiased examination of surviving children within the context of necessary, rather than “aggressive”, medical interventions and overall quality of life. A move beyond palliative or comfort care must be an option for this population. There must be a move toward valuation of life and corresponding provision of treatment and examination of developmental gains rather than limited intervention or palliative care for infants …