On the day conjoined twins Marieme and Ndeye were born in May 2016, dad Ibrahima Ndiaye was told they had a few days, weeks at best, to live.
When they survived, specialists then told him his daughters wouldn’t live for longer than a few more months. Again, against the odds, they did, and incredibly the girls will be celebrating their 8th birthday this year. But their prognosis remains the same – and so their dad is grateful for every second.
“When you are told since the beginning there is no future, you live for the present,” says Ibrahima. “Nothing the doctors tell me has changed, the fact is that any minute, any second, the worst could happen and I could lose them. I’m concentrating on right now, making every day a surprise, and celebrating life.”
Marieme and Ndeye with their dad (BBC Cymru Wales/Nick Hartley)That the girls, thought to be the only growing conjoined twins in Europe, have confounded medics for so long, and are even attending mainstream school near their home in Cardiff, is miraculous. Many would also credit their survival to their dad, who gave up a job as a CEO to care for them.
Ibrahima’s incredible journey with his daughters has been documented in a BBC documentary, Inseparable Sisters, which airs tomorrow. Following their birth in Dakah, Senegal, Marieme and Ndeye were found to have separate hearts, lungs and spines but shared a liver, bladder and digestive system, and had three kidneys between them.
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Ibrahima, 51, who worked as a managing director for a tourism firm, said four separate scans during the pregnancy did not indicate twins. Conjoined twins occur in one out of 60,000 births, so getting the news after they were born was “a massive shock”.
He recalls: “I was preparing myself just to lose them very quickly. The only thing we could do was just to be beside them and not to let them be alone through that journey. But then two weeks passed, then four weeks passed.
They survived against all odds (BBC Cymru Wales/Nick Hartley)“We started building hope, building hope for the future. And we could see very clearly that they were warriors.” Ibrahima frantically started phoning children’s hospitals around the world asking if they could offer help.
London’s Great Ormond Street, which has separated more than 30 sets of conjoined twins, asked him to bring the girls to London, where they arrived at the age of eight months. “My thought was, whatever the cost, whatever the challenge, find a place where you can do a separation. So I came here with a lot of hope, maybe too much hope at the time,” he says.
The medical team, led by Professor Paolo De Coppi, established Marieme’s heart was dangerously weak and her oxygen saturation levels low, meaning if she was separated from her twin she would almost certainly die. Ibrahima faced an agonising decision. Should he give permission for surgery, knowing Marieme would die, in order to give Ndeye a chance of life? Or decide against surgery, knowing Marieme’s health would deteriorate and both girls would die?
Their dad has spoken about their family life (BBC/Phil Sharp)“In this situation, you don’t use your mind, you have to follow your heart,” he says. “It would have been killing one of my children for the other, and this is something I can’t do. I can’t allow myself to choose who will live and who will die.” The girls would stay conjoined and remain in the UK for medical care. Their mum returned to Senegal, while Ibrahima and his daughters moved to Cardiff.
Paediatric consultant Dr Gillian Body, who first saw the girls at Noah’s Ark Children’s Hospital, recalled: “This is something I’ve only read about in textbooks. We’ve really learned together.”
Ibrahima, now a full-time dad, says one of his greatest hopes was to see the girls go to mainstream school, and in 2021 they started at Mount Stuart Primary School. “You can’t imagine the joy for me to see them in school uniforms,” he says. “The pride I have for them every single day when I see the things they are doing. You can see a lot of joy.”
The girls cannot stand or walk on their own (DAILY MIRROR)Both girls have very different personalities, he says. “Marieme’s quite reserved and introverted, while Ndeye is the volcano, she’s an extrovert, very independent and extravagant and wants to be in charge of everything,” he says. “They love each other, you can see it, when one is not well the other is very caring and tries to look after the other, and Ndeye is very protective of Marieme. But they also argue about anything and everything!”
The girls cannot stand or walk on their own – each girl controls one leg and one arm, while both can move their third arm. They also need supervision at night, to ensure Ndeye doesn’t roll over and accidentally suffocate her smaller sister.
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When they were born, doctors thought the twins could only live for a short time (BBC/Phil Sharp)When the girls are at school, Ibrahima, who volunteers for a homelessness charity, meticulously cleans their home to ensure they avoid infections. “I see parenting as our most important job assignment in life,” he says. “They’ve achieved things nobody ever thought they would.
“However short their lives might be, I want them to make their mark on the world and inspire other kids, and other parents going through similar issues. To never give up, and to always celebrate life.”
Inseparable Sisters, is on at 10.40pm on Wednesday on BBC One and 8pm on BBC One Wales.
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