Mum fighting NHS to save brain-damaged daughter, 5, says she’s ‘convinced’ Italian hospital can cure her
BRAVE mum Shelina Begum sits under the shade of a tree to escape the Mediterranean sun and gazes at the hospital of hope.
Tears roll down her cheeks, as she says: “I am convinced this is the place that can save my child.”
In less than three weeks a court 850 miles away in London will decide whether they agree with the NHS that her five-year-old daughter Tafida Raqeeb is so badly brain- damaged her life must end.
Or, they will allow Shelina to bring her here, to the Gaslini Children’s hospital in the Italian port city of Genoa, where doctors believe Tafida needs to be allowed more time for her brain to repair itself.
Tafida has been on life support at hospitals in London since February after suffering a huge brain bleed. Her mother and father, Mohammed, have been at her bedside every day.
But Shelina has left Mohammed with Tafida at the Royal London Hospital in Whitechapel and travelled with The Sun to see this remarkable hospital that could hold the key to the little girl’s future.
‘IT HAUNTS ME WHEN I’M NOT WITH HER’
The Giannina Gaslini Institute sprawls over a hillside above a private beach where sick children are allowed to play as part of their recovery. The hospital looks unchanged from the days in the Thirties when dictator Benito Mussolini redesigned the Gaslini.
But appearances can be deceptive — this hospital is one of the top children’s hospitals in Europe and its staff have pioneered 21st-Century cures for the rarest of children’s illnesses.
Shelina heard about the hospital from a family friend who takes his daughter there one week each month for gene therapy.
She says: “It haunts me when I am not with her. Today is the first time I have not seen her in the morning.
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“But in England, Tafida has been confined to bed. Here she will be able to see the sun for the first time in more than six months. That will be amazing for her and for us. Just to feel the sun on her face.
“There is lots of hope here for Tafida. It’s beautiful and just gives you this peace being here. It is not like the UK.
“When you enter the intensive care unit, you think, ‘Oh God, we are confined to this place.’ Here, you feel as if you are actually at home.”
Solicitor Shelina, 39, visits the neurology department where she hopes Tafida will be given the most advanced rehabilitation programme available.
Because the once-bubbly tot has been confined to bed for six months, her muscles and joints have begun to stiffen up.
Her mother believes she desperately needs rehabilitation, including hydrotherapy and state-of-the-art robot technology to teach her to walk again.
This week the Gaslini’s highly-qualified senior medical staff will prepare their assessment and a treatment plan, which is expected to be presented at the five-day court hearing which will decide if Tafida lives or dies.
If the court allows Tafida to go to Italy, a team of medical experts would fly her there in Gaslini hospital’s air ambulance. The parents’ nightmare began when Tafida returned home from her primary in Plaistow, East London, on February 8, complaining of being tired. The following morning she stopped breathing and was brought back to life by her 14-year-old brother who performed CPR while waiting for paramedics.
She had been born with an undetected rare condition, arteriovenous malformation (AVM), a tangle of veins and arteries at the back of the brain which had suddenly ruptured causing a massive bleed. Surgeons at King’s College Hospital, in South East London, gave her a one per cent chance of surviving the op.
Against all the odds, Tafida pulled through but the following morning her family were told if she had not died by noon, she would pass away within 24 hours. Six months later, she is still alive and her mother says she can move her hand and takes notice of her surroundings.
But Barts Health NHS Trust, which runs the Royal London Hospital, have decided that Tafida is “end of life” and her breathing tube must be taken out to allow her to die. Shelina and Mohammed, a construction consultant, have banned staff at the Royal London from talking about end of life in front of their daughter.
Shelina says: “I recently read about another person waking up from a coma after 12 years and he knew everything that was going on. He said ‘I knew people were talking.’
‘NO PARENT SHOULD GO THROUGH THIS’
“We know Tafida is listening to everything. That is why we always comfort her and say, ‘Tafida we will get out. Just keep on fighting.’”
On September 9, the five-day hearing will begin at the Royal Courts of Justice in London to decide her fate. Shelina has no legal aid and, in the worst case scenario, the couple may have to sell their home to pay for their court costs of £180,000 and the NHS legal bills are likely to be around £300,00. Plus the cost of the treatment at the Gaslini will be another £300,000.
She and Mohammed, who are third-generation Bangladeshis born and bred in east London, are hoping to raise some of this money through crowdfunding.
On the two-hour flight from London to Genoa, Shelina reads another 100 pages of the thousands of pages in Tafida’s medical file. She says: “Tafida has been stable since June 19 when they said she was going to be heading for a major stroke within two weeks. But that has not happened. She is very, very stable and continues to be stable.
“We have five days to save Tafida’s life. No parent should have to go through that.
“I am hopeful the judge will say Tafida doesn’t have a genetic condition, she is stable so why not give her another six months.”
If the unthinkable were to happen, Shelina’s worst nightmare is that her daughter will take days to die, which happened in the case of 23-month old Alfie Evans, who had a degenerative brain condition and was taken off life support last year. Shelina says: “It fills me with horror. We cannot let that happen to Tafida.”
Dad Andrea Parodi, whose daughter has been treated at the Gaslini says: “There is no ‘end of life’ in Italy. Anyone who did that would be jailed for life.”
Directors at the Gaslini Institute are expected to make an announcement this week about Tafida’s care and Shelina is hoping one of their experts will appear as a witness at the court in London next month. The hospital’s director Paolo Petralia, has already said Tafida is not brain dead and can be helped.
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He added: “We are sure that taking care of Tafida would be a good thing, and possible.” Barts Health NHS Trust issued a statement last month and has refused to comment further. The trust said it was a “sad situation” but its clinicians consider further medical treatment would not improve Tafida’s condition not be in her best interests.
At the top of a set of steps inside the grounds of the Gaslini hospital, Shelina sits outside the ornate chapel.
She says: “Many people of different faiths are praying for a miracle for Tafida. What she desperately needs now is to be given more time and then the miracle will come.”
Law to support parents
TAFIDA’S parents are backing calls for a Charlie’s Law.
It is named after Charlie Gard, the 11-month-old tot who had the rare genetic disorder, mitochondrial DNA depletion syndrome, and whose whose mum and dad lost a legal battle to keep their boy alive.
The proposed legislation would help parents like Shelina Begum and Mohammed Raqeeb.
The law would include a “significant harm” test. If a treatment were available at another hospital – as in Tafida’s case – parents should be allowed to try it unless it would cause the child “significant harm”. The law would also compel hospitals to offer mediation in disputes before resorting to the courts.
If Charlie’s Law makes it on to the statute books, it will help prevent cases like Tafida’s ending up in costly court battles. It is the brainchild of Charlie’s parents Chris Gard and Connie Yates, whose legal fight in 2017 made headlines all over the world.
Thousands of wellwishers raised £1.3million to pay for treatment in the US. But doctors denied Charlie’s parents permission to take him abroad, leading to battles at the High Court, Court of Appeal, Supreme Court and European Court of Human Rights. When they lost their final appeal – and the US doctor said it was too late to start treatment – Charlie was taken off life support.
The law is being championed by a string of senior doctors. It could become law later this year, as part of the Access to Palliative Care Bill.
Tafida’s mum Shelina says: “We absolutely salute Charlie’s parents and are supporting their campaign for a new law.”
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