INTERVIEW
LITTlE Tafida had made excited plans for her fifth birthday party. It would be themed around Disney’s film Frozen with pink and white balloons and a singalong to its famous tune, let It Go.
All her cousins and classmates would be invited. Thrillingly, there would be a huge cake bearing the face of Frozen’s heroine Elsa.
When the big day arrived on June 10 this year her parents, Shelina and Mohammed raqeeb, did indeed have such a cake for their beloved daughter. But, sadly, there was no party.
She was surrounded by her huge and loving family, including her doting older brother. But rather than being at home, Tafida was in the hospital bed where she has been in a semi-conscious state on a life-support machine since suffering burst blood vessels in her brain.
‘I showed Tafida the cake because I hoped it would make her happy,’ explains Shelina. ‘Then I discreetly took it out of sight so she couldn’t see me cut it. She adores cutting cakes. Watching me cut this of all cakes would have been horrid for her to see.’
It’s difficult enough for any family to have a child seriously ill in hospital. But what made this such torture for Tafida’s family is they are convinced she can see and hear them and is on the, admittedly long, road to recovery.
However, the hospital caring for her — the royal london in Whitechapel — disagrees. It says Tafida has no chance of recovery, and it would be kindest to switch off her life support if she deteriorates, a view shared by experts the hospital has consulted.
Tafida’s fate is now being decided at a fiveday High Court hearing which started on Monday. Judge Alistair MacDonald QC must rule whether Tafida’s family can take their daughter to a hospital in Italy for treatment or whether the hospital trust has permission to let her die. Shelina and Mohammed were in court yesterday to hear the hospital’s counsel say that keeping Tafida alive simply to comfort them would be wrong.
Katie Gollop QC said: ‘The issue is not the country where treatment can take place, but what is in the best interests of the child.
‘She cannot swallow. She cannot move, she cannot taste, she cannot see. She might be able to hear a little, we don’t know.
‘There is no prospect of recovery. All doctors agree. The Italian doctors agree. She will never come off the ventilator. Her brain damage is so severe she can’t breathe for herself. This must be devastating for Tafida’s parents. But Tafida’s interests come first, not theirs.’
Before the hearing Shelina, 39, told us: ‘My only priority is Tafida — it always has been. I want what every mother would — the chance to see her daughter grow up and live the life she was meant to. Tafida is not dying. She is not brain dead. There is ample evidence she is improving. She just needs time.’
Tafida has a rare condition known as arteriovenous malformation, or AVM, which causes a tangle of blood vessels with abnormal connections between the arteries and veins. In February, these vessels ruptured. She was left unconscious and has been on life support ever since.
Meanwhile, Shelina and Mohammed, 45, are convinced she will recover, saying they have seen a slow but definite improvement in her condition over the past few months.
Again and again, they say, they’ve been told Tafida is on the verge of death only for her to fight on.
Understandably desperate, they found the Gaslini Children’s Hospital, in Genoa, willing to treat her.
A Canadian specialist has told the family it could take up to a year for Tafida’s brain to create new pathways — time the NHS says she simply doesn’t have.
Tafida’s parents have set up an online petition urging the hospital to release Tafida, as well as a crowdfunding webpage to raise £400,000 for treatment and legal costs, having been denied legal aid.
With nearly 40,000 signatures on their petition to date, they’ve also raised almost £26,000, which includes an anonymous donation of £10,000.
As in the cases of Charlie Gard and Alfie Evans, on one side is the might of the medical profession, which insists it has the interests of the child at heart; on the other, devastated parents clinging to any shred of evidence their child might survive. CHArlIE
and Alfie died after their life supports were removed. Tafida’s parents are doing all they can to ensure she does not face the same fate. And where Tafida differs from Charlie and Alfie — who had both long endured rare brain conditions and prolonged stints in hospital — is that, until this catastrophic event, she appeared completely healthy.
Her condition has shattered her family’s lives. Home is now a single bedroom in a house near the hospital provided by a charity while their own lies empty. Their 14-year- old son, who visits his cherished little sister regularly, is living with relatives.
little wonder that Shelina’s eyes are hollow with worry and exhaustion, while Mohammed is too traumatised to do more than nod in agreement with his wife. Until Tafida fell ill, the couple regarded themselves as utterly blessed.
A devoted couple — both third generation Bangladeshi, born and bred in East london — Shelina, a solicitor working in immigration law, and Mohammed, a construction consultant, have a vast, loving family who all live in Upton Park, East london.
After having their son — whom they do not want to name — they waited to extend their family so Shelina could progress her career.
Their wait was worth it. Tafida — the Egyptian name for Paradise — arrived on June 10, 2014. ‘When they put this little girl in my arms I was overwhelmed,’ says Shelina. ‘She was so beautiful, so perfect.’
Tafida grew into a smiley, happy little girl. She loved her weekly ballet and tap classes and having her hair plaited by her proud mum. She had a heart of gold, too.
‘Tafida was always surprising me with little acts of kindness,’ says Shelina, who cut back her hours at her london law firm to care for Tafida.
‘Just before she fell ill, we met this little Down’s syndrome boy in a wheelchair in the street. She was so excited to introduce me to her friend. “He’s in my class,” she told me later. “We all love him and take care of him because he can’t do all the things we can.” It really touched me. She was so sensitive.’
But on Friday, February 8, Tafida appeared unusually subdued when she came home from school, falling asleep on the sofa. ‘She woke up around six o’clock and went to my mum’s house in the same street, which she did most evenings,’ recalls Shelina. ‘She came back at nine o’clock. Everything seemed normal — except before bed she said something that still haunts me.
‘She had been a little upset because she had wanted to spend the night at her grandma’s. When I told her I would be lonely without her, she said: “But you have my brother.”
‘Was that a premonition? She was sleeping in our bedroom and just after five in the morning she woke me and said: “Mummy, my head’s hurting.” Her eyes were fixed on the ceiling. She wasn’t moving, but tears were rolling down her cheeks. She was really struggling for breath.
‘Mohammed had gone out for a jog. When I called out in panic, my son came running. I asked him to call the paramedics. I was too distraught, he had to talk to them.
‘He got Tafida on the floor and started doing CPr — pushing on her chest to keep her alive. He had learned the technique in school. He saved her life. She took a breath and her pulse came back just as the paramedics rushed in.’
Mohammed arrived home to see his daughter being stretchered into an ambulance. ‘He was so shocked, he collapsed,’ says Shelina. Initially, the ambulance rushed Tafida to Newham University Hospital. It was a decision which Shelina is convinced delayed Tafida’s treatment.
After a CT scan at 6.48am revealed she had a ruptured blood vessel in her brain, doctors decided to transfer her to Great Ormond Street Hospital as Newham is not a neurosurgical centre. En route, the ambulance was diverted to King’s College Hospital instead where Tafida was taken into theatre at 10.05am.
‘If she had been taken straight to royal london, which is only five minutes further than Newham, she could have had the operation so much sooner,’ says Shelina.
In a hurried meeting outside the theatre, the consultant was frank. ‘He told us: “She only has a one per cent chance. Most likely she is going to die on the table,”’ recalls Shelina. ‘We were in agony.’ Tafida survived