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(GOSH) on Thursday “with his family around him”, shortly after the mechanical ventilation keeping him alive was withdrawn.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.
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”.
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.”
PAAyden Braqi died on Thursday[/caption]