Right Brain: Withholding treatment from a child with an epileptic encephalomyopathy

Neurology. 2018 May 1;90(18):857-859. doi: 10.1212/WNL.0000000000005416.

Abstract

The case of Charlie Gard, an infant who was hospitalized in England due to a mitochondrial DNA depletion syndrome that led to an epileptic encephalomyopathy, was highly publicized. Though Charlie's parents lobbied for him to receive experimental nucleoside replacement therapy as a desperate effort to save him, this request was denied, and after a lengthy legal battle, he died in late July 2017. We discuss the ethical considerations and consequences of this case.

Publication types

  • Case Reports

MeSH terms

  • Cell Cycle Proteins / genetics
  • Central Nervous System Agents / therapeutic use
  • Clinical Decision-Making / ethics
  • Epilepsy / genetics
  • Epilepsy / therapy*
  • Fatal Outcome
  • Humans
  • Infant
  • Male
  • Mitochondrial Diseases / genetics
  • Mitochondrial Diseases / therapy*
  • Muscular Diseases / genetics
  • Muscular Diseases / therapy*
  • Nucleosides / therapeutic use
  • Ribonucleotide Reductases / genetics
  • Withholding Treatment / ethics*

Substances

  • Cell Cycle Proteins
  • Central Nervous System Agents
  • Nucleosides
  • RRM2B protein, human
  • Ribonucleotide Reductases

Supplementary concepts

  • Mitochondrial DNA Depletion Syndrome, Myopathic Form