A nine-month old baby with an exceptionally rare medical condition died in a hospital yesterday after his parents lost a legal battle to force doctors to keep treating him.
Two British Court of Appeal judges had refused the parents permission to challenge a ruling which gave the hospital treating the boy, named as OT, the right to take him off the ventilator that was keeping him alive.
The boy died yesterday morning, surrounded by his parents and family, after treatment was withdrawn, the Press Association reported.
"During his short time with us OT became the focus of our lives," the baby's parents, who cannot be identified for legal reasons, said in a statement.
"He died peacefully. We will miss him greatly and wish to say that we are proud to have known our beautiful son for his brief life."
OT had a rare metabolic disorder and suffered brain damage and major respiratory failure. His parents said only one other child with their son's condition had been identified by modern medicine.
After the courts' ruling his parents said they were "deeply distressed" by the decision and were convinced that despite his problems their son's life was worth preserving.
"That was the real argument between us and the doctors - they think his life is intolerable and that his disability is such that his life has little purpose," they said.
"But we, along with some of the nurses, believed that he experiences pleasure and that he has long periods where he was relaxed and pain free."
The parents said despite their differences with doctors they were enormously grateful to NHS staff for their work in trying to keep their son alive.
"Our belief in his humanity and inherent worth justified us taking every step to support him," they said.
The NHS trust involved, which also cannot be identified, had argued that the child had no prospect of recovery and that he suffers intolerable pain as a result of his treatment and condition.
Reuters