With separate hearts and minds, but conjoined from the shoulder down, twins Marieme and Ngeye were born in Senegal three years ago.
“The first thing you do,” said their father, Ibrahima, “is go to Google. There’s a one in 10,000 chance of this happening to your children and you think: why me? Your life, your career? You just press the standby button.”
An extraordinarily tender and dignified presence throughout the agonising documentary The Conjoined Twins: An Impossible Decision (BBC Two), Ibrahima had searched the world for the right doctors for his girls and ended up at Great Ormond Street, which leads the world in the treatment of conjoined twins. But the case of Marieme and Ngeye presented its medics with an “impossible” decision.
Marieme’s heart was failing. She would not survive the anaesthetic required for corrective cardiac surgery, or separation from her sister. The toxins her leaky valve pumped into their shared circulation would kill Ngeye too. Separation meant that Marieme would die, but give Ngeye a slim chance of survival.
Watching those beautiful children giggle, hearing that they slept holding hands, it was unbearable to think Ngeye’s only hope lay in the sacrifice of her sister. It was an option Ibrahima – raising his daughters alone in Cardiff after his wife returned to Senegal to care for the rest of the family – could not countenance. We watched the hospital’s ethics committee discuss taking the decision out of the father’s hands.
Philosophy professor David Archard reminded viewers of what patients have lost and gained as “the authority of the white coat” has wained, giving us all more responsibility for medical choices we make for ourselves and our children. His calm and compassionate theory was shown in stark contrast to the intense emotion aroused by these kinds of cases. We saw furious footage of protesters outside Great Ormond Street in 2016, after medics decided (against the parents’ wishes) that further treatment of Charlie Gard for a rare mitochondrial DNA condition would prolong the child’s suffering. It was hard to square such simplistic condemnation with the complex and considered process we saw draining the staff on the wards.
I’m a fidgety TV viewer: always switching positions and pottering off for snacks. But I sat increasingly still throughout this programme. Paralysed – like Ibrahima – by the choice. When this gentle giant of a father finally wept, so did I.