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Reuben had been born very prematurely and was in the newborn intensive care unit after birth. When he was a few months old there were worries about his development, and he was later diagnosed with severe cerebral palsy, epilepsy and chronic lung disease.
Reuben had serious health problems, but he also enjoyed life in early childhood. His mother Natasha recalls:
However, Reuben's breathing troubles became worse as he got older, and when he was 8 years old his parents were asked about whether life support and resuscitation were the right things for Reuben if he became seriously unwell.
Natasha was worried that if Reuben needed resuscitation he could end up in a much worse state.
The family agreed for a DNAR (AND) order for Reuben. Natasha also remembers doctors talking about whether to put Reuben on a breathing machine if he became worse.
The family decided that they didn't want Reuben to be intubated, but they did want other, less invasive life support treatments. Reuben was taken to intensive care and his doctors tried helping his breathing with a mask (CPAP). But Reuben didn't tolerate it.
Reuben's parents were introduced to specialists from palliative care, and he was transferred back to the ward. After a time Reuben improved, and he went to a hospice before going home with the support of palliative care nurses. He was able to return to school for a short period. A little while afterwards Reuben became ill again and returned to hospital for his final care. He died in the presence of his family.