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 with lethal fetal abnormalities. This article presents a call to examine the individual child rather than decision making by diagnosis framed by recommendations from the Convention on the Rights of the Child (CRC) and Convention on the Rights of Persons with Disabilities (CRPD) Medical professionals and parents must work together to ensure medical needs are met and a positive quality of life can be achieved.
Bruns, Deborah. "Erring on the side of life: Children with rare trisomy conditions, medical interventions and quality of life." (Jan 2013).