The extraordinary story of the Senegalese Siamese who grows day by day against all odds

It is unlikely that you know the Siamese.

There are very few born each year and most are born dead or die a few days after birth.

With two years and eight months, Marieme and Ndeye are the exception.

Born in Senegal, they moved with their father, Ibrahima Ndiaye, to Cardiff, UK.

It was a difficult change, which forced the family to abandon a prosperous life in their country to settle in homes and depend on food banks.

The girls are fine now, but they have a dark future.

Marieme's heart is weak, so weak that she can die.

And if he dies, his sister Ndeye, stronger than her, will die too.

Currently, Siamese grow from day to day.

But in the coming years, Ibrahima will have to make an extremely difficult decision.

Should he let the surgeons separate them, thus endangering the lives of the two girls, but especially that of Marieme?

Or should you let both girls die together?

The birth

In Dakar, capital of Senegal, Ibrahima had a good life.

A successful project manager, he has worked at organizing vacations and events in the region for French and British tourists.

He had two teenage daughters from his first marriage and in 2015 his second wife became pregnant.

"The ultrasound showed a girl," says Ibrahima. "Only a girl."

Even when his wife had given birth three weeks earlier, she had been recommended for Caesarean section as a precaution because her belly was very big.

Yet, nothing was expected of the ordinary.

"I will be waving my wife behind the window to tell her that everything is fine," she said.

"The doctors took the baby quickly and told me that everything was fine."

It was two o'clock in the morning and, like the others, Ibrahima was exhausted, still in work clothes.

In fact, that day was to be in Belgium and receive a price from Brussels Airlines for organizing a trip to a charity bike.

Relieved, he went out to breathe the damp air of the night.

He leaned against a wall and thanked God that everything went well in the delivery.

In doing so, he received a message informing him to return to consult Dr Lamine Cissé, a specialist in obstetrics and gynecology.

Ibrahima knew the doctor well: he had attended the delivery of his other daughters.

But this time, his face was serious.

"He made me sit down and said:" We need to talk about twins. "

"Twin?"

His head began to spin.

Ultrasound did not detect twins. Had they changed their babies? In Senegal, strange things can happen …

Half an hour later, as Ibrahima began to accept the news, more and more information was coming.

"Tell me, what's wrong with the twins?" He asked calmly.

"They are united," replied Cisse.

And it is at this moment, on May 18, 2016, that the world of Ibrahima has changed forever.

Faith

"I did not understand it," says Ibrahima. "I was silent, trying to figure out how they had not noticed."

"I was so mad at the people who had done the scans"

"I could not speak, I cried, I kicked and I got angry with God."

It was only around five o'clock in the morning that Cisse took Ibrahima to meet the girls.

"I hoped it could be something simple and that they could be easily separated."

"I remember going into the room, feeling overwhelmed by the situation, but curious."

"They weighed them on a scale, which is why the first thing I saw was their face looking at me, then I saw their arms together."

"They were tiny, they weighed 3.8 kg."

"I did not understand what they looked like, I was waiting four feet, but they had two."

"They both watched me and I was frozen."

At that time, Dr. Cissé put aside his role as a doctor and became a counselor.

Seeing the desperation of Ibrahima, the doctor reminded him of his faith as a Sufi Muslim.

Sufism is a form of Islam that insists a lot on being a good person with an open mind, says Ibrahima.

This faith is the one that has prepared her to go through this moment, said Cisse.

Bad experiences are there for us to learn from them.

Still, Ibrahima could not help crying.

Then Cisse said to him, "If you continue to behave like that, what will the girls' life look like, what will happen to them if you are weak?"

Then he ordered him to go to the bathroom, wash his face, dry his tears and come back.

He had one more thing to say to him: "This is the challenge of your life, and you must be ready to take it up."

The challenge

And so, Ibrahima started a new life.

Flooded with immense love for their daughters, their mission was to protect them.

Marieme was sick: dehydrated and had trouble breathing.

You had to look for options. And quick.

The medical staff was confused and unsure. The risk of dying girls was very high.

Ibrahima ran back home, looked for clothes and immediately returned, ready to take his daughters to the local children's hospital.

There, the girls were connected to several machines and a respirator.

However, beyond the medical difficulties posed by the situation, Ibrahima had to face a different problem.

In a land of deep superstitions, the voice of this strange birth had spread.

"The girls were in a hallway where everyone could see them," Ibrahima said.

"I heard a stranger say that I had taken a picture of them."

Furious, Ibrahima asked to see the picture. He grabbed the phone and handed it to the hospital directors.

"It was as if I had been hit in the head," he says. "I realized how much they needed my protection."

"I could not calm down, I broke the phone, which I should not have done, but I was furious."

Ibrahima had reasons to be worried.

In Senegal, the way communities perceive disability is problematic.

"There is a lot of ignorance," says Ibrahima. "Many see it as a punishment from God or believe that it is the product of witchcraft."

"It's a generalized opinion and it's taboo to talk about it."

"Sacrifices are made and some children can be chosen."

"People do not see Marieme and Ndeye as Siamese sisters, they see them as a baby with two heads and that puts their lives in danger."

Control

This is how Ibrahima's fight began to protect them.

After their complaint, they were taken to a secure room, far from the eyes of the people.

There, the girls began to grow and the formation of their bodies became more obvious.

Everyone had a healthy brain, as well as his heart and lungs.

But they shared only one liver, bladder and digestive system.

Everyone had stomach, but these were united. In all, they had three kidneys.

Both could control the united arm, although Ndeye, the strongest girl, was the one who used it the most.

Soon, Ibrahima realized that there was no plan to help them.

"Nobody contacted any experts, they were just waiting for their death."

Therefore, decided to take the reins of the situation.

Three weeks later, they were sent home, where their mother was recovering from Caesarean section.

The couple told friends and neighbors that the girl was still in the hospital.

Ibrahima went back to work. But his mind was still fixed on his daughters.

"Every free minute, I did some research on the Siamese," he recalls.

"I had a challenge – out of respect for girls, I do not mean that's a problem – and I needed help."

L & # 39; s help

As an organized person with a diploma in Modern Languages, Ibrahima began contacting hospitals one by one to find out if it was possible to separate them.

He has worked with hospitals in Belgium, Germany, Zimbabwe, Norway, Sweden and the United States. The answer has always been that they could not help it.

As a last resort, tried in France, full of hope for the close ties of this country with Senegal.

The response was harsh: they told him not to seek help, that the girls would die and that there was no clinical solution.

"I can not explain how much this mail has hurt me," Ibrahima said.

"So arrogant, treating the girls and me with a lot of contempt."

"These doctors did not have the intellectual curiosity to get involved because the case was complicated."

"But it's in the challenges where the beauty of life is, where we can learn and grow, you can not imagine how much these doctors have made me feel that they've destroyed any possibility of hope. "

Inspiration

However, Marieme and Ndeye continued to challenge expectations.

Day after day, they became stronger, they began to smile, to chat, to develop motor skills in their hands.

Desperate, Ibrahim resumed his investigation.

And then, one day, when the girls were only a few months old, she was inspired by a video she had found on the Internet about Abby and Brittany Hensel, two Siamese sisters from Minnesota, in the United States.

United in the same way, they are now more than 20 years old, they work as teachers, they drive and they play sports.

It was an incredible discovery, proof that Siamese can not only survive but progress.

Ibrahima watched the video four or five times, discussing the potential implications for her own daughters.

"If anything inspired me, it was this documentary," he says.

"I saw the determination of the family, how she had protected her daughters and fought for them, and I said to myself: I will do it for my daughters."

London

This determination led him to a place: the Great Ormond Street Hospital in London, which has extensive Siamese experience.

Ibrahima sent the information of his daughters to Dr. Paolo De Coppi.

"He read it and replied very simply:" Come on. "

Making the trip was not a simple thing.

"All my financial resources were spent on drugs, treatments and consultations for girls," she says.

"I had health insurance for my job but I had not covered it."

The help came from Senegal's first lady, Marieme Faye Sall, who had heard the story of the girls through her charity foundation Serve Senegal.

"She contacted me almost immediately and offered me all the help she needed," Ibrahima said.

"I was so grateful that when it was time to name the girls a few weeks later, I called her Marieme."

In January 2017, the family arrived in the UK and met Dr. De Coppi, a pediatric surgeon.

"You can not imagine the hope and relief that he gave me the first day he met my daughters."

No money, no house, only with girls

It was as well as started medical procedures, 3D scanners, ultrasound, to see if it was possible to separate the girls, while other problems were arising for Ibrahima.

The money that the first lady from Senegal had given her for the tickets and the hotel was over and the family had nowhere to live in London.

Ibrahima had to give up work, which meant that he had no income.

In order to ensure the well-being of his daughters, he decided to seek asylum in the United Kingdom.

It was a difficult decision: in Senegal, the children of his first marriage depended economically on him.

At the same time, the Siamese sisters' mother – Ibrahima's second wife – has decided to return to Senegal to take care of her other child, leaving Ibrahima as the only one responsible for the girls.

All three of them moved to a hostel under the UK Ministry of the Interior, in South London.

"I had no work, not a peso, and my children and my other children in Senegal had no place to live," says Ibrahima.

"When I moved to the UK, I lost my career, my home, my life and my community."

"But I did it of my own free will, to give them a life".

The future

In the spring of 2017, Ibrahima received news from the doctor.

Marieme's heart was too weak to resist the surgery.

If you tried to separate them, she would probably die.

"As soon as I knew I did not want to continue, how could I choose that?"

"But I remember being sad for girls, not for me, I was just sad for their future."

"The doctor told me that he would support me in his care."

It's about a year later, in March 2018, that Ibrahima and the girls were transferred to Cardiff, Wales (asylum seekers can be moved to any place where they live). UK).

Image CopyrightGLENN EDWARDS / GETTY

Image captionNow, Marieme, Ndeye and her father live in a simple but comfortable apartment in Cardiff.

After receiving permission to stay in the country, they now live in a small apartment in the center of the city.

Here they travel by bus, trying not to attract much attention.

Sometimes, when they realize the situation of the girls, some begin to follow them in the street or begin to pray, which displeases Ibrahima.

His life in Cardiff is simple, happy but a little lonely.

The girls start talking and playing with other children.

They still can not walk, but maybe they can do it later.

Like most two-year-olds, they like to sing, laugh and watch TV.

But doctors know that every month and every year Marieme's heart weakens.

The dilemma

Currently, Ndeye is primarily the one who keeps her alive.

Marieme receives oxygen from Ndeye's heart and food from their united stomach.

But this situation overloads Ndeye's heart and body.

In 2018, doctors told Ibrahima that if Marieme suddenly dies, it will be too late to save Ndeye.

Image CopyrightGLENN EDWARDS / GETTY

Image captionIbrahima has applied for asylum in the United Kingdom. Although he has left a comfortable life in his country, he now feels safe with his daughters.

As a result, the ethical dilemma surrounding this case is changing and the question is: should we try to separate Ndeye?

It's something Ibrahima can not think about now.

For him, it's a "black hole", in which every possible scenario puts girls' lives in danger.

She consoles herself by preparing a traditional stew, singing with a small Senegalese community she met in Bristol and practicing her daily routine: taking care of her daughters and spending time with them.

In preparing dinner, he states: "To be honest, life here is very humbling and informative (not having a job or salary)."

"But I'm trying to take advantage of these difficult circumstances to learn how to become a better person."

"I have to spend this difficult time with dignity."

"For me, I need to know, in my heart, that everything has been done for them, in order to provide them with the safety and the best possible health care."

"When I look in the mirror, I need to be at peace, but beyond that, I have no control."

"The future is uncertain and my daughters are fighting for life every day and I feel blessed."

"Through them I discovered what is life."

"My daughters are warriors and the world must know."

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