Great Ormond Street Hospital for Children (GOSH) had secured permission from the high court in August to withdraw fluids from Nancy Wise. She died two weeks later.
But St Pancras Coroners Court, in central London, which deals with “unnatural” deaths at GOSH, has confirmed that it was not notified of Nancy’s death by the hospital.
A spokeswoman for the coroner told Disability News Service (DNS): “If the death was believed to be ‘natural’ than it would not be reported to us.
“It is not for us to go to the hospital and ask if it is natural or not. It is up to them to report it to us. It seems like it wasn’t reported.”
DNS has also been able to confirm that neither the Official Solicitor nor the Children and Family Court Advisory and Support Service (CAFCASS) represented Nancy’s interests and spoke up for her right to carry on living at the high court hearing in August.
The death of Nancy Wise secured widespread publicity after a series of media interviews given by her mother, Charlotte Fitzmaurice, in which she tried to justify her decision to ask the hospital to end her daughter’s life.
The court’s decision to allow GOSH to stop providing Nancy with fluids caused outrage among many disabled activists after it was reported that she had been breathing independently, was not on life-support, and was not terminally-ill.
Nancy had been born with meningitis and septicaemia, which left her with multiple impairments and high support needs, but her condition deteriorated after a routine operation two years ago to remove kidney stones left her with an infection.
GOSH originally appeared to accept that Nancy had not been terminally-ill but later told DNS that she had been terminally-ill and in extreme pain and distress, which was “impossible to successfully control because of her very complex condition”.
She died on 21 August, a fortnight after the high court granted permission for GOSH to stop providing her with fluids.
But Great Ormond Street has so far been unable to say if and why it failed to request an inquest after Nancy’s death.
It is believed that the kidney stones operation that led to Nancy’s condition deteriorating in 2012 was carried out at GOSH, but the hospital has so far refused to confirm this.
A GOSH spokeswoman also confirmed that there was no-one advocating at the hearing for Nancy’s right to carry on living.
She said that CAFCASS was “notified of the case” but “did not attend the hearing but agreed to have a representative on standby if the judge requested their input”.
CAFCASS said this week that it “was not a case that we were involved with”.
Nancy’s mother has told journalists that her daughter’s death shows that hospitals and parents should be able to decide to end a child’s life without even having to ask a court for permission.
Disabled activist Dennis Queen, herself a parent of three disabled children, said she was concerned that Nancy Wise “has been denied her rights to have an advocate who believed in her right to exist” and that her death did not appear to have been referred to the coroner.
She said: “There are questions that must be asked and information that must be written down and recorded.”
Queen said it appeared that only Nancy’s mother and GOSH were represented at the court hearing, along with court officials.
She said: “She was a 12-year-old girl… and I don’t think that only having people advocating for your right to be killed is justice.
“This is massively significant legally. These questions are important because they affect other children.
“It is about whether a 12-year-old child got justice and if she didn’t, what can we do to make sure this doesn’t happen again.”
13 November 2014