Any day now, Tafida Raqeeb will be airlifted out of Britain for treatment at a specialist children’s hospital in Italy. Her parents, Shelina Begum and Mohammed Raqeeb, are free to take her to the Gaslini Hospital in Genoa following a ruling in the High Court last week.
In granting permission for Tafida to leave the country, Mr Justice MacDonald also rejected applications by the NHS that ventilation and other “treatment” be withdrawn from the five-year-old – who suffered severe bleeding to her brain in February – with the intention that she dies.
Barts Health NHS Trust announced the next day that it would not appeal the ruling, thereby conceding a rare legal victory to parents who disagree with doctors about whether death is in the “best interests” of their child.
There was, in fact, also disagreement about the prognosis, with doctors at the Royal London Hospital insisting that nothing more could be done for Tafida, while her parents were equally emphatic that she simply needed time and the right treatment to continue to improve. Tafida, for example, stretches her fingers when her parents ask her to, and one video posted on the Save Tafida Facebook and Twitter accounts shows the girl recoiling at the sudden sensation of water on her hands (yet according to clinicians, she is in a semi-comatose state and can feel nothing).
Just how much Tafida will improve remains to be seen. But at the Gaslini she will undergo physiotherapy and will be taken out in a wheelchair, possibly spending sunny afternoons on the hospital’s private beach. It was accepted in the High Court that she might live for another 20 years.
In the meantime, the legal system and the NHS will be digesting the judge’s 70-page ruling, which gave weight, among other things, to such principles as the “sanctity of life”, the rights of parents and the religious views of patients and their families (Tafida and her family are Muslims).
In relation to the law, Shelina feels strongly that no parent should suffer the same emotional and financial costs she and her husband have endured by going to court for the right to take a gravely sick child for treatment in an overseas centre of excellence.
“We have always had Tafida’s best interests at heart and we have never wanted to come to court to have to argue for our rights to seek continued care in a world-class hospital willing to give her the treatment she needs,” she told journalists.
“The entire experience of having to fight for our daughter’s life over the last three months has been exhausting and traumatic for all of her family members and we are glad it is now finally over.”
Such an experience has resulted in Shelina, a solicitor, forming the view that laws which have allowed the state to unjustifiably override parental rights, such as the Children Act 1989, should urgently be revisited and amended. “I remember reading about those other cases – Charlie Gard and Alfie Evans – and thinking that parents should be allowed to have the final say,” she told the Daily Mail. “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 to help Tafida, visit https://uk.gofundme.com/f/save-tafida