Post mortem examinations in diffuse intrinsic pontine glioma: challenges and chances

The concept of organ donation for research purposes has evolved to overcome limited availability of tissue and foster research, in particular in diseases for which surgery is not routinely performed. Diffuse intrinsic pontine glioma (DIPG) is an almost invariably fatal childhood tumour, not amenable to surgery because of its location and infiltrative nature. We report our institutional experience of post mortem brain or tumour donation and its impact on the families. Since July 2002, we have requested permission for post mortem brain examination for research purposes, from parents whose children succumbed to DIPG. Brain donation was discussed with 21 of 27 families of patients diagnosed with DIPG between July 2002 and June 2008 at the Hospital for Sick Children. Ten (47.6%) agreed, and autopsy was performed in 9 cases. Eight of these children died at home, one in the hospital. Autopsy was performed within 48 h from death in all cases except one. Pathological diagnosis was PNET in two and glioblastoma multiforme in seven patients. A disclosure of autopsy results was provided to all parents by the neuro-oncology team. None of the families expressed distress from the autopsy, or regretted the choice made. Autopsy limited to the brain did not interfere with the choices related to palliation. The families derived comfort from the hope that scientific breakthroughs could be made and felt that they were helping to make a difference in the future management of DIPG.