The family of a seriously ill five-year-old girl are taking on an NHS trust in court to try to force doctors to release her for what they believe would be life-saving treatment abroad.
Tafida Raqeeb, from Newham, east London, sustained a traumatic brain injury in February and is on a life-support machine at Royal London hospital. Her parents want to fly her to Italy for treatment but doctors at the hospital, part of Bart’s NHS trust, say it would not be in her best interests and life-support should be withdrawn.
The trust has now asked the high court to adjudicate in the case next month. Her parents, Shelina Begum and Mohammed Raqeeb, have set up a petition urging the hospital to release Tafida for treatment as well as a crowdfunding page seeking to raise £400,000 for the costs of treatment, travel to Italy and legal costs to challenge the trust’s decision.
On the crowdfunding page, they wrote: “We believe Tafida should be given the chance of life, and the opportunity to recover and the Gaslini Children’s hospital in Genoa, Italy, shares our opinion. Doctors there are willing to treat Tafida but the Royal London hospital is trying to stop us, and is thereby denying our wishes and surely our right as parents to act in what we know to be the best interests of our beloved daughter.”
They described Tafida as a kind, bubbly and beautiful little girl. She has been in hospital since 9 February after suffering an arteriovenous malformation, a tangle of blood vessels with abnormal connections between arteries and veins.
Her parents said they had been told she would have a tracheostomy, which would mean she could come off the ventilator and might be able to go home to continue her recovery. But the medical team changed its mind and decided ventilation should be withdrawn to end her life, they said.
Begum and Raqeeb say their daughter is not brain dead and has shown gradual but encouraging signs of recovery, including in her breathing. “She has a sleep and wake cycle, she can feel pain, she is able to move her limbs, face, lips, mouth and head and she can track us with her eyes as we move around the room,” they said.
By mid-afternoon on Tuesday, the petition had amassed more than 27,000 signatures and the crowdfunding page had raised about £15,000, including an anonymous donation of £10,000.
The case has parallels with that of Charlie Gard, the baby with mitochondrial disease whose parents wanted to take him to the US for experimental treatment. Doctors at Great Ormond Street hospital, where he was being treated, believed it would only prolong his suffering. Chris Gard and Connie Yates dropped the often acrimonious legal battle in July 2017 after saying it was too late for the experimental procedure to work. Charlie died four days later.
A spokeswoman for Barts NHS trust said: “This is a sad situation, in which our teams continue to work very closely with the family to include them and offer our support.
“Our expert clinicians caring for Tafida consider, in discussion with additional medical experts from specialist centres outside of the trust, that further medical treatment would not improve her condition and would not be in her best interests.
“We recognise how difficult this is for all involved and, in accordance with national guidance from the General Medical Council in complex cases, are seeking the expert opinion of the high court to ensure the trust and the family provide the most appropriate care.”