ROME — A papally-sponsored children’s hospital in Rome that offered to make a last-ditch effort to save the life of baby Charlie Gard said Tuesday that an experimental treatment could have worked if there had been enough time, and that the infant’s legacy is the need for a “personalized model of medicine … for all the Charlies to come.”
The parents of the 11-month-old infant on Monday dropped their legal battle to transfer him to a hospital outside of the United Kingdom because “time has run out.”
“Much to our regret, we realized that we probably arrived too late,” said a statement released by the Vatican’s Bambino Gesù hospital after a press briefing on the case. “But this happens frequently with innovative therapies, which are not yet included in the continuously evolving clinical protocols of rare and ultra-rare diseases.”
The hospital had reached out to the parents earlier in July, after a Vatican statement expressing Pope Francis’s hope that the desire of Gard’s parents “to accompany and care for their own child to the end” will be respected.
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Gard has been diagnosed with encephalomyopathic mitochondrial DNA depletion syndrome, a rare disorder that has left him with brain damage and an inability to move his arms or legs, and for which there is no established medical cure.
The statement was released on Tuesday, a day after Gard’s parents announced their decision to end the legal battle to treat their child in the United States, which came after further studies done last week that showed it was too late. In it, the Vatican’s hospital said since the baby’s condition is so rare, “We are not in a position to know what might have happened 6 months ago.
“For rare and ultra-rare diseases, every case is a unique story,” the statement reads.
Far from the public eye, in the past weeks, and at the request of Gard’s mother, the hospital tried to verify, “through an international network of clinicians and researchers, the possibility to give her child a credible opportunity of care, something based on updated and agreed upon clinical evaluations and scientific evidence.”
They argue that the experimental therapy they had proposed had a “strong scientific rationale,” yet the clinical evaluation done with personnel from the hospital in collaboration with other clinicians and researchers “did not give positive results.”
“This was sad and disappointing,” the statement says.
However, the hospital underlines, “an important result” was reached: “Charlie’s life support has not been removed, before responding to his parents’ legitimate request and before properly and thoroughly verifying the child’s clinical conditions and all the existing possibilities of care.”
Chris Gard and Connie Yates, the baby’s parents, are currently asking for the right to move Charlie to their home, so he can die there.
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The Great Ormond Street Hospital treating Charlie in London told a court that the invasive ventilation the infant requires cannot be provided to him in his parents’ home, suggesting instead that he be transferred to a hospice.
In recent weeks, propelled among other things by the support from Pope Francis and President Donald Trump, the case of baby Gard became an international affair, with the United States’ congress preparing to give him permanent residency so he could receive treatment in America.
It also led to the international scientific community to focus on one case, something which according to the Vatican-sponsored hospital had never happened before. In the statement, the institution defines this as an “extraordinary event, of great importance for the future of rare disease.”
The scientific community “created a synergic network,” in an attempt to save the little boy, and this, the hospital said, “will give so much strength to all the other ‘Charlie’s to come.’”
“This is the true legacy of Charlie: The commitment to develop an actual model of personalized medicine,” the Bambino Gesù hospital said.
“For this, it was worth doing what we did, pushed by the energy of Charlie and his wonderful parents, and by the strength of this powerful alliance between clinicians, family and patient, and without forgetting the important contribution of patients’ associations, which, in these cases, act as a crucial point of reference for all the persons involved.”
Earlier in the day, Mariella Enoc, president of the pediatric hospital, gave a press conference in which she expressed regret over the fact that courts intervened in the case, when it “should have been the doctors and the family” talking to each other, and it “should have been them who decided what to do.”
Enoc said Catholic hospitals may have a special role to play in facing such difficult choices.
“Without becoming ideologized, we tried to do something.” she said. “Charlie will not continue to live but maybe there will be a different way of approaching these situations.”
Enoc also said that when it comes to scientific research, “resources must never be cut,” and research must always “reach a patient’s bed,” warning against laboratories and patients being detached from each other.