The little girl who’s proof parents will take on the world to give their child a chance of life
As Tafida’s parents battle in court for her right to seek treatment abroad – against the advice of her doctors...
the seven-hour op, but when the family gathered around her bedside, she was in a coma and unrecognisable. ‘Her face was swollen like a balloon,’ shudders Shelina.
‘She was so ill I wasn’t even allowed to touch her. Then this lovely consultant came in. She said: “Things do look bad but they always do before they get better. Try not to worry.”’
Tafida’s condition has proved bewilderingly unpredictable. The morning after the op, her heart stopped. The family were told she would die within 24 hours.
A few days later, the doctors did a brain stem test. To the family’s intense relief it showed that, although Tafida had sustained a brain injury, she was not brain dead. ‘That was the best moment,’ recalls Shelina.
Two weeks later, Tafida opened her eyes for the first time. ‘We knew she was coming back to us,’ says Shelina. Fired by these early signs of progress, the family started researching her condition.
AVM, a birth defect, is caused when blood vessels do not form correctly and can rupture. In the brain, the effects are similar to a huge stroke. Around ten babies a year in England are affected, although the condition may not be picked up until later in life.
It’s not always fatal. A brain surgeon in Canada explained to the family that AVM patients like Tafida can go into a deep coma, but slowly emerge as the brain builds new connections around damaged blood vessels, a process which can take up to a year.
HOWEVER,Shelina says no doctor from the Royal London was willing to speak to the Canadian expert. ‘It’s perfectly possible for children to go on to lead happy, normal lives,’ she says. ‘Of course, we accept Tafida has suffered some brain damage, but we believe it’s entirely possible for her to recover. All she needs is time.’
The NHS, however, concluded differently, as the family were soon to find out. In April, Tafida was transferred from King’s to Royal London Hospital. The family were led to believe she would have a tracheostomy — opening the windpipe
to house an artificial breathing tube — in preparation for her eventual rehabilitation at home.
However, by June, the mood had changed. ‘They sat us down and said: “Look, we are taking the decision away from you. Any more treatment is futile,” ’ recalls Shelina. ‘They would take her breathing tube out and that would be it.’
The fight for Tafida’s life began. After some research, they sent Tafida’s entire records — including some 11,000 images — to the Gaslini. Having also examined Tafida by video link, specialists there declared themselves happy to take the little girl. But it was not to be.
‘Royal London refused to let her leave,’ says Shelina. ‘Instead, we have had to use our savings on legal fees. I know many people are going to think we are deluded. But you only have to look at Tafida.
‘ She 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. We even have her on video waving. Tafida is not deteriorating — far from it. She needs only the minimal amount of life support at the moment and is improving all the time. She is still there and she knows I am with her. That’s why I only leave her side to sleep.
‘I sing her songs, chat to her and pray. I can’t bear her to feel lonely or frightened for a second.’
Shelina’s anguish is intensified by her strong religious belief that it is her duty to keep her daughter alive.
She is supported by the Islamic Council of Europe, which has ruled that it is ‘impermissible for the parents, or anyone else, to give consent for the removal of the life-supporting machine from their
child’. Their ruling continues: ‘ This is seen as a great sin that has a multitude of grave consequences for them.’
So far, Barts Health Trust, which runs the Royal London, has been unmoved. Last week, it attempted to remove the relative who the family appointed as Tafida’s representative in court on the grounds of her being Muslim. Mr Justice Macdonald refused.
The trust’s spokesman said: ‘This is a very sad case, for which we are in close contact with the family to offer support.
‘ Our expert clinicians caring for the child have determined, in discussion with additional independent medical experts elsewhere in London, that further invasive medical treatment is futile.
‘As such we are engaging with the family to ensure we uphold the child’s best interests, recommending withdrawal of life-sustaining treatment and instigating palliative care.’
Those words hold little comfort for Shelina.
‘Whatever they may say, we feel totally unsupported,’ she says.
‘In June they said she would die within two weeks. But she’s still here. We have promised Tafida we will bring her home. We intend to keep that promise.’