Mariella Enoc, director of the Bambino Gesù pediatric hospital in Rome, says “the coming of a personalized model of medicine will help all future ‘Charlies’”
The parents of little Charlie, Enoc explained, did not accept the decision to stop their child’s respiratory aid before all possibilities were explored. In particular, they sought experimental treatment which had not yet been considered as a possible course of action, but that the Bambino Gesù hospital had declared it was nevertheless willing to attempt.
Scientists “went to do tests [on the child] but found that it was too late,” the director of the Roman hospital further explained. As all the medical options were studied, the parents withdrew their appeal to the British High Court.
Mariella Enoc refused to speak of “responsibilities” regarding delays in London. She would rather speak of “crises” which demand that we act “beyond ideologies,” thinking in terms of “opportunity,” rather than of “responsibility.”
In addition, she stressed, we must not forget how rare Charlie Gard’s disease is, how difficult it is to quickly establish an exact diagnosis, and how much time and work it takes the scientific community to come up with possible treatments.
However, the story of the little English boy leaves us with something positive, according to Mariella Enoc: it has shown “the capacity of the scientific community to come together” around a patient’s case. “A network of synergies” was created to care for the life of a child, she said.
This is “Charlie’s legacy,” according to the director of the Bambino Gesù: “the emergence of a personalized model of medicine that will help all future ‘Charlies’.”
The 10-month-old infant, suffering from a genetic disorder, was the subject of a decision by the European Court of Human Rights last June 27th. Opposing the wishes of the child’s parents, the Court had pronounced itself in favor of the cessation of care. The parents then appealed, arguing that certain treatments had not yet been contemplated.