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Charlie Gard. Situación actual del bebé enfermo que quieren desconectar en el hospital

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Por Justo Aznar, publicado en el Observatorio de Bioética de la Universidad Católica de Valenciael 13 de Julio de 2017. 

Charlie Gard, el bebé que padece una enfermedad mitocondrial, espera la decisión de los jueces sobre la posibilidad de retirarle la asistencia mecánica que le mantiene con vida. 

El pequeño Charlie Gard, de tan sólo 10 meses, tiene una enfermedad genética rara, que le ha llevado a permanecer ingresado en un hospital londinense los últimos meses. 

Por Justo Aznar, publicado en el Observatorio de Bioética de la Universidad Católica de Valencia el 13 de Julio de 2017.

Charlie Gard, el bebé que padece una enfermedad mitocondrial, espera la decisión de los jueces sobre la posibilidad de retirarle la asistencia mecánica que le mantiene con vida.

El pequeño Charlie Gard, de tan sólo 10 meses, tiene una enfermedad genética rara, que le ha llevado a permanecer ingresado en un hospital londinense los últimos meses.

Aspectos médicos

Charlie nació el 4 de agosto de 2016. En octubre de ese mismo año fue hospitalizado en el Great Osmond Street Hospital de Londres, diagnosticándosele una enfermedad que afecta a la función de las mitocondrias, el síndrome de encefalopatía mitocondrial por disminución del ADN (MDDS), que condiciona que no obtenga suficiente energía para sus músculos, riñones, cerebro y otros órganos, lo que le causa una progresiva debilidad muscular y daño cerebral.

Aunque en ese momento parece que no existía un tratamiento específico para esta alteración mitocondrial, en enero de 2017 su madre tuvo conocimiento de un tratamiento experimental, utilizando nucleósidos, que se estaba evaluando en Estados Unidos en pacientes con una enfermedad similar a la de Charlie, por lo que sus padres valoraron la posibilidad de trasladarlo a ese país para que fuera tratado, pues, según ellos se podría conseguir una mejora de la salud de su hijo de al menos un 10%.

Al mismo tiempo, el periódico “The Guardian” anunció que el Hospital de Estados Unidos que posee el medicamento, se ofrecía para que Charlie fuera tratado de inmediato, aunque el Great Osmond Street Hospital se opuso, proponiendo en su lugar suspender el soporte respiratorio del bebé.

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