From Eugenic Euthanasia to Habilitation of ``Disabled'' Children: Andreas Rett's Contribution

Abstract

Although the name of Andreas Rett is familiar to many from his eponymous neurogenetic syndrome, his other achievements involving the care of disabled children deserve special attention. His tireless advocacy helped to bring fundamental changes in the medical and societal attitude toward disabled individuals in a city that had recently seen more than 7500 disabled children and inmates of psychiatric hospitals actively euthanized by National Socialist (Nazi) decree. Most notably, this study demonstrates the remarkable changes that can be achieved single-handedly by a vocal and energetic physician. Yet at the same time, several instances are recorded in which Rett appeared to prioritize his own professional advancement at the expense of truthful disclosure of his own past, as well as that of some of his close associates. Dr Rett's professional life and contributions, now 10 years after his death, presents a compelling object lesson for neurologists and others involved in the care of the disabled.

Survival with Rett syndrome: comparing Rett’s original sample with data from the Australian Rett Syndrome Database

“…There is a significant difference between the Austrian group and each of the three Australian birth year groups, but there is little difference between the three Australian birth year groups. Quality of care and placement issues may account for the difference between the cohorts 21 . However, we could not identify any improvement in average life expectancy over the last three decades.…”

“…Quality of care and placement issues may account for the difference between the cohorts. 21 However, we could not identify any improvement in average life expectancy over the last three decades. The follow-up period for the ARSD (since 1976) has not been sufficiently long to establish information on life expectancy after 32 years.…”

Genetic disorders associated with postnatal microcephaly

“…MECP2 ‐related disorder is an X‐linked syndrome that typically affects females. Andreas Rett, a developmental pediatrician whose early career was marked by enthusiastic participation in the Nazi Party [Ronen et al, ], described the disorder in 1966 [Rett, ]. His first observations were not widely publicized until 1983 when other patient reports emerged from around the world [Hagberg et al, ; Percy, ].…”

Epidermal nevus syndrome

“…41.4). She was a victim of "active euthanasia" in 1944 (Ronen et al, 2009). This distinctive presentation with the typical triad of hemifacial epidermal nevus, ipsilateral HME, and hemifacial lipoma was first described by Gross and Uiberrak in 1955, who introduced the term "hemimegalencephaly."…”