- author, Lucy Owen
- roll, From BBC News
Doctors told Maryam and Ente's parents that they would only survive a few days after birth.
Inseparable Siamese twins, now 7 years old – believed to be the most bonded and growing Siamese twins in Europe.
Although the two women have distinct personalities and mindsets, they live in dependence on each other.
“When you are told from the beginning that there is no future, you live only for the present,” says their father Ibrahima.
Siamese twins are rare, with one in every 500,000 live births in the UK.
Half of them are stillborn, and a third die within 24 hours of birth.
So Mary and Ente celebrate their seventh birthday with a group of friends, not only for Ibrahima, but also for the doctors who cared for them.
Two hearts
Mary and Ente share a pair of legs and a pelvis, but each has a spinal cord and a heart.
They receive 24-hour care but attend a mainstream school in South Wales.
“They are warriors and prove them all wrong,” says Ibrahima.
“My daughters are very different. Maryme is very quiet, she has an introverted personality, but with Ente it's completely different, she's very independent,” she says.
“I wouldn't say it's easy, but it's a great privilege to witness this ongoing battle for life.”
When twins were born in Senegal in 2016, doctors predicted they wouldn't live more than a few days.
“I was preparing myself to lose them very quickly,” Ibrahima says in the documentary Inseparable sisters (Inseparable Sisters, in free translation) from the BBC.
To separate or not
Doctors in the girls' home country of Senegal believed their best chance of survival was separation.
After calling hospitals around the world “begging” for help, the family came to the UK in 2017 for treatment at Great Ormond Street Hospital in London.
Ibrahima hoped the renowned children's hospital, which has separated more conjoined twins than anywhere else in the world, could separate them and return them home. His brothers and sisters were waiting in Tucker – but it didn't happen.
Tests revealed that Mari's heart was too weak for the complicated surgery and that she would not survive the operation.
Medical experts warned that none of the daughters would survive more than a few months without separating the family.
Ibrahima and a large group of medical experts discussed at length the complicated decision of whether or not to separate the girls.
It was finally decided that the best option was to separate them.
“This is killing one of my daughters for another, something I cannot do,” Ibrahima said at the time. “I can't let you choose who lives and who dies.”
After the decision, the mother returned to Senegal to care for her other children. Mariam, Ente and Ibrahima stayed in England for medical treatment and all three traveled to Cardiff.
“It was very difficult not being able to go home because I had the rest of my family and my job,” says Ibrahima, a former managing director of a travel agency in Senegal.
“But I didn't think too much, I just followed my heart. It's my responsibility to make sure there's someone who's here for them, and that's my purpose in life.”
Twins need frequent check-ups because they are at risk for infection and heart failure.
“It was all very new at first. I had only read about it in textbooks,” says Gillian Body, a pediatrician at the University Hospital of Wales.
“They're two separate vertebrae with all their nerves, but somehow they're completely coordinated, and they don't need to tell each other how to move an arm or a leg, and it just works,” he says.
Daily difficulties
Dressing twins can be challenging.
“I have to buy two identical blouses and take them to a tailor to stitch them together,” says Ibrahima. “They have two legs, so they can wear regular pants, but the waist is too wide, so you have to adjust that as well.”
The family is now integrated into the community in Cardiff and the twins receive round-the-clock care from their parents and carers provided by the NHS, England's public health system.
They are in their third year at the local public school, receiving support from two carers in the classroom.
“I want them to live a normal life, play with children, laugh, make friends and grow as individuals,” says Ibrahima.
“They don't need to hide from anyone, being in a regular school shows them they're part of the community, and they're lucky to be part of this community.”
The next challenge for Mary and Ente is trying to stand and walk. Currently, about 20 minutes a day are available with the help of a walker.
“They achieved what no one else could,” says Ibrahima.
“I know at any moment I'll get a call that something bad has happened. How long? I don't want to know. Let's make every day a surprise and celebrate life.”
“It may be ironic, but I am lucky despite the difficulties. They bring me so much joy. Being their father is a great blessing.”
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