A one-year-old boy severe and irreversible neuromuscular disease has died after a High Court judge ruled his treatment should stop.
Ayden Braqi died 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Hospital (GOSH) on Thursday with his family around him, shortly after the mechanical ventilation keeping him alive was withdrawn.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 that he suffered from a severe, progressive and irreversible neuromuscular disease for which there is no known cure, but was 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, with its lawyers claiming that the burdens of treatment ‘outweigh the limited benefits he could enjoy’ from prolonging his life.
His mother, Neriman Braqi, opposed the bid, claiming that he could continue to receive care and that he ‘still smiles’ 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.
‘Prolonging his life prolongs also for him the burden of bearing those benefits.
‘He has had and I have no doubt would continue to have the very best of care at GOSH. I have taken account of the views of his mother that he should continue to have that care and her strong wishes in respect of this application.
‘I must however take an objective view of Ayden’s best interests from his own point of view and from the point of view, in the widest sense, of his welfare.’
She continued: ‘It is lawful and in his best interests for his mechanical ventilation to be withdrawn and to receive such palliative care and related treatment, including pain relief and anxiolytics, under medical supervision as considered appropriate to ensure that he suffers the least distress and retains the greatest dignity until such time as his life comes to an end.’
Ayden was admitted to Great Ormond Street Hospital at around three months old and remained there for the rest of his life.
Ms Braqi 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’.
Ms Braqi praised Ayden’s care but said different treatment that would allow him to return home ‘could have been done’.
Cleo Perry KC, for Ms Braqi, said she accepts the diagnosis but wishes for the continuation of all available care for Ayden.
But 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 was on a ventilator and his prognosis was ‘very poor’, with Ms Powell adding that treatment of his progressive condition would have been ‘futile’.
She 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 found: ‘The burdens of his underlying condition and the demands of the clinical treatments within the intensive care setting to keep him alive, drive me to the conclusion that it is not in his interests to continue to bear those burdens.’
She added that Ms Braqi ‘has fought unstintingly’ for her son and ‘could not have done for him more than she has’.
A spokesman for GOSH said: ‘At Great Ormond Street Hospital we look after children with some of the most complex and serious medical conditions. For every child, our staff always have their very best interests at the heart of all decision making.
‘Ayden was a patient at GOSH for a long time and our teams got to know him and his family well as we provided one-on-one care 24 hours day and his family were a devoted and loving presence at his bedside. Everyone involved in his life has always wanted the very best for him. Unfortunately, sometimes not everyone agrees with what is best.
‘Going to court is our very last resort and something we only do when all other avenues are exhausted. It makes a difficult situation harder, and we are sorry for the distress it has caused Ayden’s family. We acknowledge that this is a situation no parent or clinician wants, and we have always understood and respected his family’s views and their devotion to Ayden.
‘The judge concluded that it is not in Ayden’s best interests to continue to receive invasive, life-sustaining treatment.
‘This has been an incredibly difficult situation for everyone involved, none more so than for Ayden’s family. Our thoughts are with them and our teams will continue to do all we can to support them.’
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