Baby boy dies after court ruled his life support could be switched off despite mum saying he ‘still smiles’
A ONE-year-old boy at the centre of a High Court battle on whether his life-sustaining care should be continued has died.
Ayden Braqi tragically passed away at Great Ormond Street Hospital (GOSH) on Thursday “with his family around him”, shortly after the mechanical ventilation keeping him alive was withdrawn.
The High Court heard in October how he suffered from a “severe, progressive and irreversible neuromuscular disease” for which there is no known cure.
However, he was stated to be “cognitively intact” and could “see, hear, smell, feel, and enjoy”.
The Great Ormond Street Hospital for Children NHS Foundation Trust, which cared for Ayden, asked a judge to rule that his treatment should stop.
Its lawyers claimed that the burdens of treatment outweighed the “limited benefits” he could enjoy from his life being prolonged.
His mother, Neriman Braqi, had opposed the bid, claiming that he could continue to receive care and claimed the boy “still smiled” despite his condition.
In a ruling published on Friday following Ayden’s death, Mrs Justice Morgan said: “I am satisfied that whilst he can derive comfort and pleasure from the company of his family, the enormous burdens of his illness and the treatments associated with it outweigh even those very real benefits.”
She added how she had to take an “objective” view of Ayden’s best interests and that this meant ending his life support.
Ayden was admitted to Great Ormond Street Hospital at around three months old and remained there for the rest of his life.
Neriman said in her evidence that she would sometimes spend around 16 hours a day with her son, with Mrs Justice Morgan stating she loves Ayden “with a devotion which is hard to put into words”.
She also praised Ayden’s care but said different treatment that would allow him to return home could have been undertaken.
Cleo Perry KC, for Neriman, had accepted the diagnosis but had wished for Ayden’s care to be continued.
However, Debra Powell KC, representing the trust, said in written submissions that Ayden had a “very rare type of genetic disorder that causes profound and progressive muscle weakness”, leaving him “unable to breathe for himself and has no spontaneous movement of his limbs”.
He had been on a ventilator and his prognosis was “very poor”, with Ms Powell adding that treatment of his progressive condition would have been “futile”.
She had said: “Ayden’s life will inevitably be significantly shortened by his condition, and the severity of his condition is such that it is difficult or impossible for him to derive significant benefit from continued life.
“It is in his best interests to receive palliative care only.”
She added that medics believe treatment which could have allowed Ayden to be cared for at home was not possible, due to Ayden’s “clinical instability”.
But Mrs Justice Morgan said that while the case of one of “desperate sadness”, she felt the boy should no longer have to bear the burden of his incredibly difficult intensive care.
She added that his mother had “fought unstintingly” for her son and “could not have done for him more than she has”.