Agustín Silberberg1, Josefina Robetto2, Guadalupe Grimaux3, Laura Nucifora4, José Manuel Moreno Villares5. 1. Department of Bioethics, Hospital Universitario Austral, Universidad Austral, Av. Juan Perón 1500 (ex Ruta 234), B1629AHJ, Pilar, Buenos Aires, Argentina. ASILBERB@cas.austral.edu.ar. 2. Chair of Pathophysiology, Facultad de Ciencias Biomédicas, Universidad Austral, Buenos Aires, Argentina. 3. Department of Bioethics, Facultad de Ciencias Biomédicas, Universidad Austral, Buenos Aires, Argentina. 4. Medical Student, Facultad de Ciencias Biomédicas, Universidad Austral, Buenos Aires, Argentina. 5. Department of Pediatrics, Clínica Universidad de Navarra, Madrid, Spain.
Abstract
Until recently, trisomy 18 was considered a disease incompatible with life, with a high percentage of electively terminated pregnancies. The usual behavior was denial of treatment. But some medical interventions have changed the survival of children. A search for articles published in the PubMed database on the latest medical decisions in newborns with trisomy 18 was done. Two main subjects were examined: (1) the chances of survival and (2) the perception of quality of life. Trisomy 18 is no longer considered a disease incompatible with life, and the discussion has shifted towards the type of treatment that is appropriate to initiate at birth. There are two medical attitudes towards these children: either palliative care or life-prolonging interventions. With medical intervention, the survival is as high as 23% at 5 years of age. Regarding the quality of life, all decision-makers emphasize the possibility of taking the child home. The physicians' perception is more pessimistic than that of the parents. Only a few children benefit from medical interventions. Conclusion: There is a rethinking of treatment behavior in children with trisomy 18. The possible quality of life achieved should be further investigated. It seems inappropriate to simply dismiss medical interventions.What is Known• Until recently, trisomy 18 was considered a disease incompatible with life. The most common behavior was abortion and denial of treatment.What is New• It is no longer considered a lethal disease. The type of medical intervention that is appropriate to perform is now being discussed. Selected children benefit from an interventionist approach.
Until recently, trisomy 18 was considered a disease incompatible with life, with a high percentage of electively terminated pregnancies. The usual behavior was denial of treatment. But some medical interventions have changed the survival of children. A search for articles published in the PubMed database on the latest medical decisions in newborns with trisomy 18 was done. Two main subjects were examined: (1) the chances of survival and (2) the perception of quality of life. Trisomy 18 is no longer considered a disease incompatible with life, and the discussion has shifted towards the type of treatment that is appropriate to initiate at birth. There are two medical attitudes towards these children: either palliative care or life-prolonging interventions. With medical intervention, the survival is as high as 23% at 5 years of age. Regarding the quality of life, all decision-makers emphasize the possibility of taking the child home. The physicians' perception is more pessimistic than that of the parents. Only a few children benefit from medical interventions. Conclusion: There is a rethinking of treatment behavior in children with trisomy 18. The possible quality of life achieved should be further investigated. It seems inappropriate to simply dismiss medical interventions.What is Known• Until recently, trisomy 18 was considered a disease incompatible with life. The most common behavior was abortion and denial of treatment.What is New• It is no longer considered a lethal disease. The type of medical intervention that is appropriate to perform is now being discussed. Selected children benefit from an interventionist approach.
Authors: Jacqueline E Nguyen; Jason L Salemi; Jean P Tanner; Russell S Kirby; Ronald P Sutsko; Terri L Ashmeade; Hamisu M Salihu; Laura L Drach Journal: J Perinatol Date: 2018-09-20 Impact factor: 2.521