Two girls, one body
The conjoined twins whose fight for life took them from Senegal to Wales
the quiet one
with a sweet tooth
the live wire
with a pitch-perfect voice
Conjoined twins - you're unlikely to see them.
Only a tiny number are born each year, the vast majority of which are stillborn or die soon after birth.
Marieme and Ndeye are the exceptions.
At two years and eight months, they live in Cardiff, having moved with their father, Ibrahima Ndiaye, 50, from their birth place of Senegal.
It's been a journey of hardship, with the family swapping a prosperous existence for one of hostels and food banks.
The girls are now safe, but a shadow looms.
Marieme's heart is weak - so weak, she may die.
If this happens, her stronger sister Ndeye will die with her.
At the moment, the twins grow each day and delight in life.
But in the coming years, an unimaginable choice may lie before Ibrahima.
Should he let surgeons attempt separation - risking the life of both girls, but particularly Marieme's?
Or should he let both girls die together?
The birth
Dakar - the capital of Senegal. A bustling city on Africa's west coast and one which gave Ibrahima a good life.
A successful project manager, he worked organising holidays and events across the region, largely for French and British tourists.
He was the father of older teenagers from his first marriage, and in 2015, his second wife fell pregnant.
“Scans showed a girl,” Ibrahima says. “Just one girl.”
Even when his wife went into labour three weeks early, a precautionary caesarean advised due to the large “bump”, nothing untoward was expected.
“I was waving to my wife from behind the glass, signalling everything would be okay,” he explains.
“The doctors removed the baby, then whisked it away, telling me all was fine.”
Clinique Niang in Dakar, where the twins were born
It was two in the morning and, like everyone else, Ibrahima was shattered, still dressed in his work suit and shoes.
In fact, he was meant to be in Belgium that day, collecting an award from Brussels Airlines for his efforts in organising a charity bike tour.
Reassured and relieved, he wandered outside on to the busy boulevard, breathing in the humid night air.
He leaned back against a wall, thanking God for the safe delivery of his daughter.
But as he did, a message came for him to return inside to meet Dr Lamine Cissé, a specialist in obstetrics and gynecology.
Dr Lamine Cissé
Ibrahima knew this doctor well as he had delivered two of his older children.
But this time, his face was serious.
Ibrahima says: “He sat me down and said, ‘We need to talk about the twins’.”
Twins?
Ibrahima's mind began spinning.
The scans hadn't detected twins. Had his babies been swapped? Stranger things happened in Senegal...
Thirty minutes later, just as Ibrahima began to accept the news, there was more to come.
“So tell me... what is wrong with the twins?” he asked, slowly.
“Conjoined,” Dr Cissé said. “They are conjoined.”
And it was at that moment, on 18 May 2016, that Ibrahima's world changed forever.
“I couldn't take it in,” Ibrahima explains. “I was silent, trying to figure out how this had been missed.
“I was so angry at the people who had done the scans.
“I couldn't speak, tears were coming. I was kicking things and raging against God.”
It wasn't until five in the morning that Dr Cissé took Ibrahima to meet his girls, as his wife lay recovering.
Ibrahima says: “I hoped it would be something simple, and that they could be separated easily.
“I remember walking into the room, feeling overwhelmed but curious.
“They were on scales being weighed, so the first I saw was their faces peeping upside down at me. Then I saw the conjoined arm.
“I walked around the scales. They were tiny, weighing just over half a stone (3.8kg).
“I couldn't understand how they were built. I was expecting four feet, instead there were two.
“They were both looking at me and I froze.”
It was here Dr Cissé temporarily abandoned his role as doctor and took on the mantle of counsellor.
Seeing Ibrahima's desperation, he reminded him of his faith as a Sufi Muslim.
Sufism is a form of Islam, which, Ibrahima explains, places strong emphasis on being a good person with an open mind.
This faith had prepared him for this moment, said Dr Cissé.
Bad experiences were there to be learned from.
Still Ibrahima could not stop weeping.
So that's when Dr Cissé told him: “If you keep doing that, what will the girls' life be? What will happen to them if you are weak?”
He ordered Ibrahima to go to the toilet, to wash his face, dry his tears, then come back.
Then he had one more thing to say: “This is the challenge of your life, and you have to be ready.”
The challenge
Ibrahima had every reason to be worried.
In many ways, since gaining independence from France in 1960, Senegal has proved to be one of Africa's success stories.
It has a tradition of stable democracy, with high female representation in parliament.
There is a strong love of sport, particularly basketball and wrestling, while the country is known for its warmth and generosity, the national football team dubbed the Lions of Teranga or Lions of Hospitality.
But there is also a problem with how some communities view disability.
“There is ignorance,” Ibrahima explains.
“People might see it as a punishment from God, or believe witchcraft is involved.
“This view is widespread and taboo to talk about.
“There are dangerous sacrifices, and certain children can be targeted.
“People would not see Marieme and Ndeye as conjoined twins.
“They would see them as a baby with two heads and their lives would definitely be at risk.”
Chasing solutions
And so Ibrahima's fight to protect his girls began.
Following his complaints, they were moved to a secure room, away from prying eyes.
There, as the girls grew, so too did a clearer picture of their bodies.
They each had a healthy brain, plus their own heart and lungs.
But they shared a single liver, bladder and digestive system.
They had a stomach each, but these were linked, and three kidneys between them.
They both had control of the conjoined arm, though mostly it was Ndeye, the stronger twin, who used it.
But just as Ibrahima began to understand more about the twins' condition, so it became clear there was no plan to help them.
“No-one was contacting experts,” he says. “No-one was helping them or on their side.
“They were just waiting for them to die.”
So this is when he finally took control.
At three weeks old, the girls were sent home to where their mother was still recovering from her caesarean.
Unable to tell the truth, the couple lied to friends and neighbours, explaining their child was still in hospital.
But as Ibrahima returned to work, liaising with international partners to organise tourist excursions across the region, his mind was consumed.
“Every break, I researched conjoined twins,” he says.
“I had a challenge - out of respect for the girls, I don't wish to call it a problem - and I needed help.”
An organised person, with a degree in modern languages, Ibrahima began contacting hospitals one by one, seeking out if separation might be possible.
First, due to his work connection with Brussels, he tried Belgium, but he was told there was no hospital that could help.
Next he tried Germany, where two of his sisters were living, but there were no hospitals with experience of such complex cases.
He tried Zimbabwe, Norway, Sweden, and hospitals in America - Seattle in Washington, Jacksonville in Florida and Baltimore in Maryland.
Doctors at one hospital informed him he would need to provide a million dollars before the girls could be seen.
As a last resort, he tried France, hopeful because of the country's strong links to Senegal.
He emailed scans and medical documents.
But the reply was blunt.
It told him not to bother seeking help, that the girls would die and there was no clinical solution.
“I cannot tell you how much that email hurt me,” Ibrahima says.
“It was so arrogant, treating the girls and I with such contempt.
“Those doctors didn't have the intellectual curiosity to engage because it was a complicated case.
“But challenges are where the beauty of life is, where we learn and grow.
“You cannot imagine how low those doctors put me, how dark life was.
“They had closed every single window of hope.”
Yet as Ibrahima mourned, still Marieme and Ndeye confounded expectations.
Day by day, they grew stronger, beginning to smile, then babble, their bright eyes focusing, tiny fingers gripping.
In desperation, Ibrahima renewed his search.
Then one day, when the girls were a few months old, he found inspiration - a video on the web of Abby and Brittany Hensel, from the US state of Minnesota.
Joined in a similar way, they are now in their twenties, working as teachers and able to drive a car and play sport.
For Ibrahima, the video was an astonishing discovery - proof that conjoined twins could not only survive, but thrive.
In his smart Dakar office, he watched the video four, five times, slowly processing the potential implications for his own girls.
“If something inspired me, it was this documentary,” he says.
“I saw the determination of the family, how they had protected the children and fought for them.
“I said to myself, ‘I will do this for my girls’. It boosted my determination.”
London
His extra research led him to one place - Great Ormond Street Hospital in London, which has a strong expertise in conjoined twins.
Ibrahima says: “I had never heard of it, but I contacted a consultant, Paolo De Coppi, and sent him the girls' information.
“He read it over and replied so simply.
“He said, ‘Come’.”
Relief flooded over Ibrahima; finally someone was willing to help.
Still, making a trip to London was not going to be easy.
“All my financial resources had already gone on medicines, treatment and consultation fees for the girls,” he explains.
“I had medical insurance through my work, but it didn't cover this.”
Help was on hand, however.
Senegal's first lady, Marieme Faye Sall, had heard about the girls' birth through her charity foundation, Servir Le Sénégal.
Senegal's president, Macky Sall, with his wife, Marieme Faye Sall
Ibrahima says: “She contacted me almost immediately offering to help with whatever I needed.
“I was so grateful, when it came to naming the girls a few weeks later, I named Marieme after her.”
Landing in January 2017, the family met with Dr De Coppi, a consultant paediatric surgeon.
Ibrahima says: “You cannot imagine the hope and relief he gave me the first day he met my daughters.
“In Senegal, if you respect someone you lower your eyes, looking away or down.
“This is how I treat him because I can see the passion he has for what he is doing.
“He made me feel so strong. He said he would try to help, to just take a look. This is all I ever wanted.”
Dr De Coppi, a consultant paediatric surgeon at Great Ormond Street Hospital
And so the medical procedures began - the 3D scans and ultrasounds to see if the girls could possibly be separated.
But as they did, so Ibrahima's personal life began to unravel.
The money gifted by Senegal's first lady for flights and accommodation dried up, making the family effectively homeless in London.
Due to his caring responsibilities, Ibrahima was also forced to resign from his job, rendering him without income.
With the girls' safety and wellbeing paramount, he decided to seek asylum in the UK.
He knew that the healthcare would not be as good in Senegal, and that the girls' lives could be at risk if they went out in public.
But this was not an easy decision to make.
Back in Senegal, Ibrahima's teenage children from his first marriage relied on him for money.
Unable to provide it, they were now in arrears on the family's rental property and facing eviction.
Meanwhile, the twins' mother, Ibrahima's second wife, decided to return to Senegal to look after her other child, leaving Ibrahima as the twins' sole carer.
Now a family of three, they moved into a Home Office hostel in Croydon, south London.
Ibrahima says: “I had no job, not even a single penny to my name, and both I, my girls and my older children in Senegal were homeless.
“By moving to the UK, I had lost my career and home, my life and community.
“But I did it willingly, to give them life.”
A solution was eventually found for his children in Senegal, but back in the UK the situation did not abate.
“I was very grateful for the hostel,” Ibrahima explains. “But it wasn't suitable for young children.”
Without food, Ibrahima was given vouchers for a food bank.
He says: “I thought they were for a supermarket.
“I was fasting that day to feel closer to my faith, but I walked 40 minutes and ended up at a church in west London.
“Most of the people there were homeless and I realised what it was.
“I remember feeling so humiliated. How had my life come to this?
“I began to cry in front of everyone, but a nun saw me and took me to a room.
“I explained about the twins and why I was there.
“She knew I was Muslim but asked if she could pray for us, so we sat and prayed together for 15 minutes.
“Then she packed up bags with as much as I could carry and told me to come back whenever I needed.”
Then, in spring 2017, news came from the consultant.
Marieme's heart was too weak for surgery.
If separation was attempted, she would most likely die.
Ibrahima says: “As soon as I knew the situation, I did not want to proceed. How could I choose this?
“But I remember feeling so sorry for the girls.
“Not for me. I was not upset for me. I was just upset for their futures.
“The consultant told me he would support me in their continuing care, so this is all I wanted.”
The future
It was roughly a year after this, in March 2018, that Ibrahima and the twins were moved by the Home Office to Cardiff - asylum seekers can be moved anywhere in the UK.
Granted discretionary leave to remain in the UK, they now live together in a small, functional flat, close to the city centre.
Here, they make their way around by bus, trying not to draw attention to themselves - tricky enough given Ibrahima's 6ft 8in (2.03m) frame.
Sometimes, when the girls are spotted, people follow them down the street, or begin to pray, something Ibrahima hopes will stop.
In many ways, life here is simple and joyful, albeit isolated.
The girls’ speech is developing, and they can enjoy play groups and respite at Tŷ Hafan, a children's hospice.
They cannot currently walk, but this may come.
Like most two year olds, they both love to sing, laugh and watch CBeebies.
Yet doctors know that, as each month and year passes, Marieme's heart grows weaker.
At present, she is mainly being kept alive by Ndeye.
She receives oxygen from Ndeye’s stronger heart and food via their linked stomachs.
This situation, however, is now putting strain on Ndeye's heart and body.
In late 2018, doctors told Ibrahima that if Marieme does die suddenly, it will be too late to save Ndeye.
So now the ethics surrounding this case are changing and the question being asked; should separation be attempted in order to save Ndeye's life?
This, at present, is not something that Ibrahima can think about.
He describes it as a “black hole”, with each possible scenario putting the girls' existence at risk.
His comfort comes from cooking traditional stew, singing with a small Senegalese community he has met in Bristol and his daily routine - caring for and spending time with his girls.
As he prepares their dinner, he says: “To be honest, I find life here very humiliating and humbling, not having a job or salary.
“But I try to remember to use this difficult time to become a better person.
“I need to go through this hard time with dignity.”
He adds: “For me, I need to know, in my heart, that I have done everything for them, provided them with safety and the best possible healthcare.
“When I look in the mirror, I need to be at peace.
“Beyond this, I have no control.
“The future is uncertain but my girls battle every day for life and I feel very blessed.
“I have found out through their lives what life is.
“My girls are warriors and the world needs to know this.”
