‘My daughters are very different,” begins their dad, Ibrahima. “Marieme is very quiet, very reserved. Ndeye is very independent. She wants to be in charge of everything.” He smiles, watches his girls slurp ice-creams along the waterfront at Cardiff Bay, and crumbles the thin end of a cone to feed the pigeons while, around the back of their wheelchair, the girls’ hands meet – as they often do. “To have conjoined twins as a parent is to have something you didn’t expect,” says Ibrahima softly to camera. “I would not pretend that it is easy. It is not. But it’s a huge privilege. You feel lucky to witness this constant battle for life.” What a gentle and profoundly inclusive opening.
Marieme and Ndeye were born conjoined in Dakar, Senegal, just over seven years ago. Inseparable Sisters, by film-maker Nick Hartley, is an intimate, uplifting documentary and the culmination of BBC Wales Today anchor Lucy Owen following Marieme and Ndeye’s progress for several years. They are, literally, death defying.
When they were born, doctors did not expect them to live more than a few days. Two weeks passed, then four. Ibrahima’s hopes started to build. “We could see very clearly we were going to deal with warriors,” he says. “They hung on to life.” He was told they would need to be separated in order to survive and that the surgery wasn’t available in Senegal. Which is how he, his wife and their other children ended up in the UK at Great Ormond Street children’s hospital. The girls’ mother, who returned to Senegal with their other children, does not appear on screen and is only briefly mentioned. No doubt there are powerful reasons for this, but her absence in what is essentially a story of familial love is felt.
In the UK, they received devastating news: Marieme’s heart was too weak to survive separation, but without the operation neither of the girls would live more than a few months. “At this point it was killing one child for another … something I can’t do,” says Ibrahima, shaking his head. “I can’t choose who will live or die. No.”
Since then, Marieme and Ndeye have thrived. They share one pair of legs, one pelvis and, from the abdomen up, many organs. Some of the ways in which they are conjoined, and separate, remains a mystery. “They have totally separate spinal cords,” their paediatric consultant explains, “yet somehow they completely coordinate. They don’t have to tell each other how to move an arm. It just works.” Their resilience is extraordinary, but so is their father’s. Ibrahima, a calm, eloquent and deeply committed man, left everything – home, wife and other children, job, country – to raise his girls. “I just followed my heart,” he says. “This is my parental responsibility. This will be my life’s purpose.” At its core, Inseparable Sisters is a portrait of the almighty power of parental love and how deeply connected that love is to duty.
Their remarkable journey is tracked in detail – not from Senegal to Cardiff, nor from hospital appointment to hospital appointment, but from day to day, and milestone to milestone. We see the girls turn seven at their local mainstream primary school, where they are supported by two classroom assistants, who each day help them into a standing frame so they can increase their strength and, hopefully, one day meet their goal: to stand unaided, and walk.
We meet their friends who, when asked what they like about them, say brilliant things, such as: “I like cats, and they like cats.” We meet their carers, who stay over every night so Ibrahima can get some respite. We see them get their hearts checked at their local NHS university hospital and their clothes custom-made by an inclusive textiles project at the University of South Wales. We see Ibrahima feed his daughters their nightly painkillers named after My Little Ponies – Fluttershy for Nurofen and Applejack for paracetamol. It is a small detail that brought the first of many tears to my eyes.
What emerges is a utopian picture of a loving, fully functioning – and, crucial this, fully funded – welfare state. In a country in which the rights of disabled people have been violated by the Tory government to such a horrifying degree that cash-starved councils were seriously considering “warehousing” disabled people in care homes, this is deeply moving to see. Especially for fellow parents of children with disabilities, of which I am one. And, God, how we need hope. At the end of Inseparable Sisters, the people who help Ibrahima, Marieme and Ndeye live a good and communal life are gathered together so the girls can show off their new clothes, and their dad can thank them. “You have been fighting for these girls,” Ibrahima says to the assembled group of women. “I witness it every day and without your help nothing would be possible.”
• Inseparable Sisters aired on BBC One and is available on iPlayer.
