Case Summary and Timeline
| Charlie Gard was born in August 2016. He developed early signs of muscle weakness at a few weeks of age and by 2 months of age was admitted to hospital with poor feeding, failure to thrive, and respiratory failure. He was ventilated and admitted to intensive care, where investigations led to diagnosis of infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). |
| The specific form of MDDS in Charlie Gard had previously been reported in ∼15 infants, with typical features including early onset, rapid progression and death in infancy.21 The clinicians caring for Charlie felt that his prognosis was extremely poor and counseled his parents that life-sustaining treatment should be withdrawn. |
| In early 2017, Charlie’s parents identified a potential experimental treatment. In animal models, supplementation with deoxypryrimidine nucleosides in the myopathic form of MDDS apparently led to reduction in the biochemical defect and severity of clinical phenotype.22 A US physician involved in the nucleoside research offered to provide treatment, and Charlie’s parents raised funds for Charlie to travel to the United States. |
| However, Charlie’s doctors were not happy with him being transferred overseas for treatment. They applied to the Family Division of the High Court on February 28 for permission to withdraw life support and to provide palliative care. Charlie’s parents opposed this plan. On April 11, Justice Francis ruled in favor of the hospital.23 Charlie’s family appealed, and the decision was reviewed (and upheld) in the Court of Appeal (May 23), Supreme Court (June 8), and European Court of Human Rights (June 20).24 |
| At that stage, all avenues of legal appeal had been exhausted, and plans were made to withdraw medical treatment. |
| After widespread public and media attention, statements of support for the family were made by President Trump and Pope Francis and a number of international medical and scientific experts. On July 10, the hospital elected to bring the case back to the high court. The court arranged for the US mitochondrial specialist to review Charlie in London. After a multidisciplinary meeting and new evidence that Charlie’s condition had considerably worsened, on July 24, his parents accepted that further treatment could not help him and withdrew their application to the court. |
| Charlie Gard was born in August 2016. He developed early signs of muscle weakness at a few weeks of age and by 2 months of age was admitted to hospital with poor feeding, failure to thrive, and respiratory failure. He was ventilated and admitted to intensive care, where investigations led to diagnosis of infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). |
| The specific form of MDDS in Charlie Gard had previously been reported in ∼15 infants, with typical features including early onset, rapid progression and death in infancy.21 The clinicians caring for Charlie felt that his prognosis was extremely poor and counseled his parents that life-sustaining treatment should be withdrawn. |
| In early 2017, Charlie’s parents identified a potential experimental treatment. In animal models, supplementation with deoxypryrimidine nucleosides in the myopathic form of MDDS apparently led to reduction in the biochemical defect and severity of clinical phenotype.22 A US physician involved in the nucleoside research offered to provide treatment, and Charlie’s parents raised funds for Charlie to travel to the United States. |
| However, Charlie’s doctors were not happy with him being transferred overseas for treatment. They applied to the Family Division of the High Court on February 28 for permission to withdraw life support and to provide palliative care. Charlie’s parents opposed this plan. On April 11, Justice Francis ruled in favor of the hospital.23 Charlie’s family appealed, and the decision was reviewed (and upheld) in the Court of Appeal (May 23), Supreme Court (June 8), and European Court of Human Rights (June 20).24 |
| At that stage, all avenues of legal appeal had been exhausted, and plans were made to withdraw medical treatment. |
| After widespread public and media attention, statements of support for the family were made by President Trump and Pope Francis and a number of international medical and scientific experts. On July 10, the hospital elected to bring the case back to the high court. The court arranged for the US mitochondrial specialist to review Charlie in London. After a multidisciplinary meeting and new evidence that Charlie’s condition had considerably worsened, on July 24, his parents accepted that further treatment could not help him and withdrew their application to the court. |
Adapted from Wilkinson D, Savulescu J. Ethics, Conflict and Medical Treatment for Children: from Disagreement to Dissensus. Amsterdam, Netherlands: Elsevier; 2018.