"They are together, they are equal": the heartbreaking choice of Siamese twins' father | Society

Marieme and Ndeye each have a sticker on their face: a butterfly for Ndeye and a smiley face for her twin sister. They laugh while they remove and stick them; Ndeye then decides that it is their father's turn to place the smiling face on his right eye.

"Ndeye is the most alive, she loves attention, and Marieme is a calmer, calm and thoughtful personality," said Ibrahima Ndiaye, the twin's father. "Ndeye is the fire and Marieme is the ice cream."

Their behavior – and their differences – are typical in three-year-old twins, but Marieme and Ndeye are not at all. The sisters are conjoined: they have distinct brains, hearts, and lungs, but share the liver, bladder, and digestive system, and have three kidneys between them.

Ndiaye took her daughters from Senegal to Great Ormond Street Hospital (GOSH) in London at the age of eight months after a desperate search for medical help. Over the past two and a half years, he and the hospital have had to make a heartbreaking decision about whether to have a surgical separation that would make Marieme not survive, but that could give Ndeye a reasonable chance of life. Without separation, the two will almost certainly die.

The dilemma is at the center of a BBC documentary, Siamese twins: an impossible decision, to be released Monday. It follows the deliberations of the hospital ethics committee in which clinical and non-professional members, as well as Ndiaye, address existential questions presented by scientific and medical advances.

"The decisions are much more complex than before," said Joe Brierley, pediatrician consultant and chair of the Ethics Committee. "We can do incredible things compared to 20 or 30 years ago. But the fact that we can do it does not always mean that we should do it. "

The role of the committee is not to make decisions, but to lead clinical teams and families with "difficult moral dilemmas and to ensure that different views and values ​​are expressed," he said. The ethics committee was the first in the UK to invite patients and their families to participate in the discussions – a sometimes uncomfortable process, Brierley said.

Marieme and Ndeye were born in Dakar in May 2016. Ndiaye, who has four older children, paid four separate scans during her wife's pregnancy. None of them even said twins, let alone twins Siamese. So, their birth was a "mbadive shock".

In the months that followed, he contacted hospitals around the world, asking them if they could offer their help. Each time, the answer was negative: until Great Ormond Street said, "Come and we'll see what we can do." The hospital has separated more than 30 pairs of Siamese twins, including this year Safa and Marwa Ullah of Pakistan, who were joined at the head.

It was a light in the dark, said Ndiaye. "I came [to London] with a lot of hope. Although the situation is difficult, I thought, I am in the UK and they will find a solution. "

The family arrived in January 2017, while the twins were eight months old. The medical team, led by Professor Paolo De Coppi, quickly established that Marieme's heart was dangerously weak and that its oxygen saturation was low. "Paolo told me that we could not do [the separation] without losing Marieme. The light, the hope, the waiting … all of a sudden, that has disappeared, "Ndiaye said.

He must face a heartbreaking decision: should he give permission for surgery, knowing that Marieme will die, in order to give Ndeye a chance of life? Deciding not to have surgery would almost certainly mean that Marieme's health would deteriorate and both girls die. But Ndiaye simply could not think of knowingly causing Marieme's death.

"My emotional connection with the girls was so strong that I was very attached to them. It was a very difficult moment, "he said. "In this situation, you do not use your brain, you follow your heart. Every decision is heartbreaking, so much agitation, so many consequences. "

There was a legal precedent. In 2000, the UK High Court ruled that the Maltese twins "Mary" and "Jodie" had to be separated, contrary to the wishes of their parents. Without surgery, both would die; with surgery, Mary would inevitably die but Jodie could have the chance of a complete life. It was an "excruciating dilemma," said one of the judges.

The case was introduced by St Mary's Hospital in Manchester, where the twins were born and received care. The parents of the girls, fervent Catholics, said that the surgery was "not the will of God". The operation took place. Mary is dead, Jodie survived.

At a meeting of the Ethics Committee to discuss Marieme and Ndeye, Brierley asked whether it would be fair to go to court if the twin's father and the clinical team came to different conclusions . The documentary clearly shows this by explaining to Ndiaye the consequences of the non-separation of girls: "The death of Marieme will be the death of Ndeye – it is not possible to stop there or change it … [And] it will not be an option to separate them once Marieme begins to die. In the end, there was "no disagreement" with Ndiaye's painful decision not to separate the girls.

That was the only possible conclusion, said Ndiaye at the Observer"They are together, they are equal. Great Ormond Street had been very honest and very clear with me all the time. We came [to the hospital] as patients, but now we are more than that. I consider [the team] in family. I have never felt the pressure to accept an operation. I have never been disrespected. "

Brierley described Ndiaye as "an incredibly dignified, thoughtful, eloquent man and a wonderful father. You see these darling girls and they know that they are cherished. This is impossible for everyone, but he will live with his decision for the rest of his life. "

Ndiaye was supported by his faith as a Sufi Muslim. The Qur'an tells him to be strong, honorable, dignified and patient in the face of trials, he said. His wife returned to Dakar and he lost his job as project manager in tourism and events. After granting him discretionary permission to stay in the UK, the Home Office transferred Ndiaye and the girls to Cardiff. "I've put everything on hold. I put all my energy into taking care of the girls and making them happy.

"I know that there will be a moment when they will have to leave. But at this point they are fighting – and they are also giving me a reason to live. They are my inspiration, I dedicate everything to them. I will never let them walk alone, "he said.

"I need to know that I gave them everything I could. I am lucky to be part of this trip. We are always traveling. I do not know how it will end. "

Siamese twins: an impossible decision is on BBC2 on August 5th at 9pm