Tafida Raqeeb was put on life support after blood vessels ruptured in her skull in February this year
The three huge gold balloons tied to the foot of five-year-old Tafida Raqeeb’s hospital bed bear a single word: Congratulations.
They look strangely out of place in the cold and clinical intensive care ward with its banks of flickering screens and medicine trolleys.
Nurses smile kindly as they move briskly around, yet it’s obvious this is a place where there’s usually precious little to celebrate.
But today Tafida’s jubilant parents are bubbling over with joy. On Thursday, Shelina Begum and Mohammed Raqeeb won a historic legal victory which now allows them to take their little girl toItalyfor treatment. Until that moment, it looked as though Tafida’s short life was going to end in this soulless room in the children’s intensive care unit at RoyalLondonHospital.
Instead, Judge Mr Justice MacDonald stunned the medical establishment by blocking the hospital’s bid to switch off Tafida’s life-support machine.
He ruled that it was right that difficult decisions should ‘be taken by a parent in the exercise of their parental responsibility’. As Tafida was not suffering, it was vital for him to consider’ the sanctity of life ’.
Doctors initially concluded that Tafida could no longer move, see or feel. They said she had no prospect of getting better and asked the High Court for permission to withdraw her life supporting treatment
The couple’s lawyers – who spent five days arguing in court last month – say the ruling establishes that parents know best what care is right for their child.
It is in the starkest contrast to the tragic cases of Charlie Gard and Alfie Evans, where judges sided with the NHS. Yesterday, the hospital announced it would not pursue an appeal.
‘I am still in shock,’ says Shelina, 39, a dignified woman who finds it hard to believe she has been catapulted into the limelight.
Talking for the first time since the judgment, exclusively to the Mail, she says: ‘When the judge gave his verdict, I burst into tears. It’s the first time I’ve allowed myself to cry in public. I was overwhelmed. All the stress and tension just poured out.
‘We have waited over three weeks for the verdict and it has been horrific – even harder than when this all started. Privately, I’ve wept every night. On Wednesday I was so petrified that I paced all night.
‘I couldn’t banish the fear that Tafida was going to get a death sentence. I kissed her goodbye and all I could say was, “Pray for life, baby.” ‘
‘ I knew the judge had listened very carefully to all our arguments and I have great faith in the justice system – I’m a lawyer. But I was in such a state it took seconds for the verdict to sink in.
‘We aren’t deluded. We know that – even with treatment – Tafida is very unlikely to ever be the same. But this gives her the best chance.
Her mother Shelina Begum (pictured) and father Mohammed Raqeeb won a historic legal victory which now allows them to take their little girl to Italy for treatment
‘She was such an energetic, happy girl with a big smile and a huge heart. I don’t know whether she will ever tear around on her bike again with her dad or whirl around the kitchen showing off her ballet steps.
‘But I hope and pray that one day she will run into my arms. Just to hear her call me “Mummy” again would be magical.
Whatever happens – whatever adaptations we have to make – we will bring her home and love her. Her life is precious and our love for her is unconditional. It isn’t based on what she can or can’t do. ‘It’s impossible to know whether Tafida has a sense of the significance of what has just happened.
On life support, she cannot speak or do more than move her arms and legs a little. But, pointing at the balloons swaying gently in the slight breeze, Shelina says, ‘You’ve done it, Tafi. You brave girl. You’ve been Mummy and Daddy’s strength. You’ve done it, ‘before covering the little girl’s forehead in kisses.
Tafida, an outwardly perfectly healthy, happy little girl who had just started school, was left brain damaged in February when a blood vessel burst in her brain.
It happened because she was born with the rare and undiagnosed condition AVM (arteriovenous malformation), which causes a tangle of blood vessels with abnormal connections between the arteries and veins.
The shock for the family is unimaginable. For eight months they were forced to fight through the courts to give her a chance of life.
Tafida is pictured in hospital with her mother Shelina Begum and surrounded by uplifting balloons. The parents are overjoyed as they have just won their legal battle
While they are proud that their victory may give hope to the parents of other desperately ill children, uppermost in the family’s mind is that it clears the way for them to take Tafida to the specialist Gaslini children’s hospital in Genoa, Italy.
Doctors there, who have studied her case and seen 11, 000 images, are confident they can offer treatment and are poised to send an air ambulance to collect her next week.
Her father Mohammed, a 45 – year-old construction consultant, was so ecstatic when the judgment came that he insisted the only way to celebrate was to buy the biggest balloons he could find and rush back to the hospital with them.
‘It’s Tafida’s victory,’ he says. ‘There have been so many times when the doctors said she was going to die – but she has always fought back. That’s why we have kept fighting. ‘
Tafida’s 14 – year-old brother (who the family are choosing not to name) heard the news from friends.
‘We tried to ring the school. But we couldn’t get an answer, ’says Shelina. ‘By the time we spoke to him, he knew. He was over the moon. . . He’s so excited – we all are. ’
Gaslini, on the northern Italian coast, is one of the top children’s hospitals in Europe. In its neurology department Tafida will get an advanced rehabilitation program, including hydrotherapy and state-of-the-art robot technology, to help her to walk again.
Shelina says: ‘Tafida will paddle in the sea and even swim if she’s strong enough. . . She will get to feel the breeze on her face. It will be the first time she will have been in the fresh air since February. ’
The family are well aware that going to Italy for six months will take a massive financial and emotional toll. Neither parent has been able to work for months. Through crowdfunding they are seeking to raise £ 400, 000 for the costs of treatment, travel to Italy and legal costs. So far, they have raised over £ 35, 000.
While they are in Italy, their son will stay behind with family members. Shelina and Mohammed are at the center of a huge and loving family who all live in Upton Park, East London.
‘It’s not ideal but he understands it’s necessary. He adores his little sister so much he even wanted to make his own appeal to the judge, ’says Shelina. ‘We will miss him desperately. But he will fly out to see us at weekends. ’
Mohammed is acutely aware of the sacrifices to come. ‘I worry about the toll it is taking on Shelina and my son,’ he says. ‘She has been amazing – even stronger than I realized. And he has been a star. I am so very proud of him. ‘
In reaching his decision, Mr Justice MacDonald made it clear that he was moved by the obvious devotion of Tafida’s family.
But the couple are the first to admit that until February 8 there was absolutely nothing to mark them out as anything other than completely ordinary.
‘Tafida was sleeping in our bedroom and just after five in the morning she woke me and said, “Mummy, my head’s hurting,” ‘recalls Shelina. ‘Her eyes were fixed on the ceiling. She wasn’t moving but tears were rolling down her cheeks and she was struggling for breath.
‘Mohammed had gone out for an early-morning jog. When I called out in panic, my son came. I asked him to call the paramedics. I was so distraught that 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 learnt the technique in school. He saved her life. She took a breath, her pulse came back just as the paramedics rushed in. ‘
Her parents have spent eight months camping out beside her and have described the’ agony ‘of every-day as their daughter has only a one per cent chance of living
Mohammed arrived home to find his daughter being put into an ambulance. ‘I still can’t really believe it,’ he says, his eyes welling up. ‘I think I will wake up and find it’s a nightmare.’ Tafida went through a seven-hour operation at London’s King’s Hospital and was in a coma. Outside the operating theater, 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.’
But while Tafida survived, her condition has been unpredictable.
The morning after the operation her heart stopped. She went into a coma and the family were told if she had not died by noon, she would die within 24 hours. But to the family’s intense joy a brain stem test showed that, although Tafida had sustained a brain injury, she was not brain dead. ‘That was the best moment,’ recalls Shelina.
After two weeks, Tafida opened her eyes for the first time. The family started researching the condition. A birth defect, AVM is caused where 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. The family learned that AVM patients like Tafida go into a deep coma but can slowly emerge as the brain builds new connections.
In April, Tafida was transferred to Royal London Hospital. In June the medical staff concluded that any more treatment was pointless. ‘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 couple have spent eight months camping out beside Tafida. Their ‘home’ is a single bedroom with shared facilities in a house provided by a charity. Shelina has not set been home since February.
‘Most days I am with Tafida from 8am until midnight when Mohammed takes over,’ she says. ‘If I can’t be there – because of seeing lawyers – family step in. We don’t want her ever to wake up and feel frightened or wonder, “Where’s Mummy and Daddy?”
‘Walking into the hospital I always take a deep breath. Although the staff are kind, it still feels wrong. I’ve made her bed a little oasis of calm. She has her toys, including a teddy I brought back from Italy and the pink cushion she used to cuddle up on, saying princess.
‘If she’s asleep, I call her name and she wakes to my voice. Her pupils open wide and she looks at me. I brush her teeth and plait her hair. It’s waist-length now.
‘Then I chat, pray and read to her. I have a Disney book about princesses. And we watch Frozen, her favorite Disney film, at least twice a day.
‘Staff haven’t mentioned the case. I’m not angry with the hospital. I am just upset they have put us under such needless pressure and wasted so much of our money and theirs. ’
Most of us will never know how it feels to be in Shelina’s position. But few of us would argue that she deserves to feel vindicated.
‘I remember reading about those other cases – Charlie Gard and Alfie Evans – and thinking that parents should be allowed to have the final say, ‘Shelina says. ‘But never in my wildest dreams did I think it would happen to us.
‘ This has been a victory for all parents. It shows that parents ’rights won’t be taken away. And it recognises the value of disabled children. Tafida might be profoundly disabled but her life is still of value. ‘
For more information or to donate to the fund, go towww. gofundme.com/f/save-tafida
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