Separating the Entangled

As Kashmir turned abnormal, the parents of a 15-year-old literally bundled and flew him to London for studies. Separated from home and his parents, the young boy channelized the loss by deciding to do something that will minimize the pain of kids. Three decades later, Dr Noou ul Owase Jeelani, is the most talked about London-based super-surgeon, who is perhaps the only expert in separating twins with fused skulls, an elaborate time-intensive  procedure that costs Rs 10-20 crore, a team of more than 100 experts from diverse fields and no less than 40 hours of surgery, reports Masood Hussain and Humaira Nabi

Safa Marwa back home with their brothers and sisters in a BBC photo. The separated twins are seen in the lap of their mother and uncle.

In January 2017, Zainab Bibi, 34, was expected to deliver her eighth child in remote Charsadda in Pakistan’s Khyber Pakhtunkhwa belt. Recently widowed, Zainab underwent a caesarean and gave birth to twin daughters. It was five days later when Zainab was well enough to see the newborns and found them joined at their heads. Named after the twin Mecca hillocks, Safa and Marwa, Zainab was mother to craniopagus twins – fused at their heads, a condition so rare that it affects one in 2.5 million births. Almost 50 such twins are estimated to be born around the world every year. However, most such twins do not survive beyond 24 hours. Fed by the single nervous system, talkative Safa had never seen the shy Marwa.

As the desperate family looked for medical solutions, they were told that surgery was possible but one of the two would die, an option Zainab was unwilling to accept. Finally, in April 2007, they came across Dr Noor ul Owase Jeelani, a neurosurgeon at London’s Great Ormond Street Hospital (GOSH), whose team had successfully separated one such set of twins in 2006.

Jeelani, a world-renowned neurosurgeon from Kashmiri empathised with the conjoined twins. But the surgical interventions are so elaborate, complex and expensive that arranging funds became an instant priority. Having very high plasticity, a child’s brain has a mechanism to compensate for lost function in the event of a brain injury. So, Safa and Marwa were supposed to undergo surgery as early as possible. The time crucial for their separation was, however, spent on getting the visas, organizing travel and raising funds for their multiple surgeries.

“Safa Marwa case was a very complicated one,” Dr Owase Jeelani said. “With the surgery costing around 1-2 million pounds, which was unaffordable for the Zainab’s family, I fundraised for them which took a lot of time. As a result, their surgery suffered a delay, which was not good for the girls.”

A child, the world-renowned surgeon said, recovers more quickly from a brain injury than an adult. “The surgery should preferably take place under one year age so that the brain is able to cope with it. However, in the Safa Marwa case, the girls were brought to our hospital from Pakistan when they were 19 months old, which made their case more complicated,” Owase added.

Owase Jeelani led the GOSH team comprising almost 100 doctors from 15 different disciplines including plastic surgeons, anaesthetists, theatre nurses, operational department assistants, scientists and engineers from Virtual Reality (VR), Artificial Intelligence (AI) and 3D printing evolved the best strategy to optimise chances of success. The series of surgical operations totals more than 50 hours of surgery time and took four months between October 2018 and February 11, 2019. Off late, they have added a robotic surgeon to their team as well.

Their separation was global news, as almost every other such operation carried out by Jeelani’s team is. Safa Marwa had a labyrinth of shared blood vessels, which nourished both their brains. Only one twin could receive some of the key blood vessels. These were given to Marwa, who was the weaker twin. As a result of this, however, Safa had a stroke, and now has permanent damage to her brain and may never walk.

So far, the GOSH team led by Jeelani and craniofacial surgeon Professor David Dunaway have carried out seven such surgeries and every one of them – except one in which the parents did not want it to be made public, was a piece of major news for the entire influential media of the globe. This has made Jeelani, perhaps the only such expert who can manage these complex procedures. Over the years, he has evolved a clear protocol about how these cases can be managed successfully.

Journey to England

Born and raised in Kashmir, Dr Owase was awaiting his matriculation results when Kashmir witnessed a political upheaval. The first decision that his parents took was to shift him to England, where few of his uncles and aunts lived.

Dr Noor ul Owase Jeelani, one of the world’s most respected super specialists in separating twins’ conjoined in heads

“I vividly remember my childhood in Kashmir as being the happiest part of my life,” Owase said. “I was 15 when things took an ugly turn in Kashmir. While most Kashmiris stood their ground, many parents sent their children to different parts of the world in anticipation of a better future and I was one of them.”

Irrefutably being a very traumatic experience for a 15-year-old kid to be detached from his family, friends and homeland suddenly, the event raised a lot of existential questions but Dr Owase Jeelani remained determined to make the best out of the pain and channelize his energy to make the world a little better place.

“Moving to England had a great impact on my mindset. I felt home-sick and out-of-place for quite some time. I missed playing with my friends, I missed chinars and Mughal gardens but there was no way that I could come back. So, I made reconciliation with the situation and focused on my studies,” Owase said talking about the pain of separation and the reconciliation with fate.

Dr Jeelani (right) with Professor David Dunaway, the two co-founders of nonprofit, Gemini Untwined.

Belonging to a family of doctors, Dr Owase Jeelani had a proclivity for the medical profession. He went to Medical School in England and specialized in Paediatric Neurosurgery. After finishing his studies, he has been working in the Great Ormand Street Hospital for the last 22 years. It was there that he carried out the most complicated craniofacial surgeries in the world.

“When I joined the Great Ormand Street Hospital, I saw parents and children coming,” Owase remembers. “The pain that I went through as a child helped me shape as a doctor who would connect emotionally with his patients. The desire to prevent a child from suffering as a result of a medical complication drove me. I wanted these children to have the childhood that was denied to me. My childhood pain has also helped me empathise with and understand children a little better.”

The motivation helped him to think and evolve the mechanism that can help these kids. As his surgical knife moved from one set of twins to another, the world recognised his contribution. Dr Owase Jeelani was named in The Times’ top 100 surgeons in the UK in 2011. In 2012, he was in the list of top 100 children’s doctors. There is no major media outlet in the world that has not written about him and his skill.

The First Case

Dr Owase Jeelani first made it to the world headlines in 2011, when he and his team successfully separated the famous Sudanese twins, Rital and Ritag.

Nigerian Rital and Ritag Gaboura with their doctor parents, a BBC photograph

“We treated our first case of conjoined twins in 2006, but that case was not done under media scrutiny, as requested by their parents,” Owase said. “The surgery was deemed successful. The girls, who are now 16 years old, are doing well in their lives. Rital and Ritag were our second case of craniopagus twins to deal with.”

Rital and Ritag were daughters of a doctor couple and they directly talked to the GOSH team. “We examined their scans, and our prediction algorithm yielded a favourable result. We brought them to England, completed the necessary legalities, and proceeded with the surgery,” Dr Owase remembers. “With multiple surgery processes, it took us four months to complete the procedure. Both the girls, who are now 16, are doing well in their lives.”

His team’s last major surgery was the separation of Israeli craniopagus twins who were separated in September 2021 in Beersheba. This is the first such surgery on craniopagus twins that was carried out outside England involving the local medical fraternity and the GOSH experts. This, he said, was because Israel had enough and adequate infrastructure available within to manage the complex procedure. “There was this very special moment when the parents were just over the moon,” Jeelani said after the surgery was successfully concluded. “I have never in my life seen a person smile, cry, be happy, and be relieved at the same time. The mother simply couldn’t believe it, we had to pull up a chair to help her to calm down.”

Gemini-Untwined

These surgeries are hugely expensive and require Rs 10 to Rs 20 crore without the services of the senior medical staff. In most of the cases, Dr Owase said managing the funds was a major priority and it would take its own time. In 2019, he co-founded Gemini Untwined, a global charity dedicated to supporting the research and treatment of craniopagus twins. With this, helping these rare set of twins has become slightly faster as an NGO is taking care of the finances, sparing the doctor to focus on the procedures.

“With the success in Safa Marwa case surgery, I was sure that a lot of cases will follow. However, realizing the huge amount of money such surgeries require, I was sceptical about the success rate and the time it will take to fundraise again as it did in Safa Marwa’s case,” Dr Owase said. “So, in 2019 I along with my team at GOSH launched Gemini Untwined, where we raise funds to carry out medical and scientific research for such children. The cost of the surgeries for the craniopagus twins from Turkey and Israel was compensated by Gemini Untwined. The establishment of the charity has also helped me in sharing the burden of fundraising for these children. Now, I am able to focus on my surgeries properly.”

The Turkish Twins

While all cases of craniopagus surgeries are complex, some are significantly more difficult. The first two cases that Owase’s team faced was on a relatively milder spectrum. But as the number of cases increased so did their complexities.

Turkish Twins Yigit and Derman with their parents after the successful surgery

“The experience we gained from the cases we dealt with in 2006 and 2011 helped us to take up and handle the case of Safa and Marwa in a much better way,” Owase said. “It was followed by Turkish conjoined twin brothers Yigit and Derman and the recent Israeli twins. So, with each case, our learning curve improved. Had we come across our recent case from Latin America earlier, things might have been a bit different. Because this case is by far the most complicated case our team has dealt with.” Its details will come out once the twins are formally separated. There have been some procedures already but it is still a work in progress.

The case of Turkish twins, Yigit and Derman, also witnessed huge media attention because of the involvement of the president of Turkey Recep Tayyip Erdogan and his wife Emine Erdogan. The first couple of Turkey had intervened in the case of the twins and supported them to fly to London for the rare operation.

Born on June 21, 2018, Yigit and Derman were born sharing part of their skull and a cranial vein. Speaking to a Turkish news portal Evrensel, their mother recounted being asked to abort the pregnancy before the birth once the twins’ condition became clear but “we never agreed to that as they were given to us by Allah.”

The intricate process of separating Yiḡit and Derman was accomplished over the course of four successive procedures, taking around 40 hours altogether. The team was able to generate an exact duplicate of the boys’ skulls in Virtual Reality (VR) software using medical scans and 3D models, giving them the opportunity to study and comprehend Yiḡit and Derman’s intricate anatomy.

Dr Owase Jeelani remembers every bit of these complex procedures. He puts the Yiḡit and Derman’s brain separation as the Moses moment, when Moses, the prophet of God, was able to see the way through the Red sea while it parted. The 100-strong GOSH team was responsible for the boys’ treatment and care, involving a multidisciplinary approach. Neurosurgeons and craniofacial surgeons, consultants, nurses, radiologists, anaesthetists and technicians, supported by the physiotherapy and psychology and play teams, worked together to share their world-class expertise to separate the twins and ensure their rehabilitation becomes a success. These operations are tense hours. Owase told an interviewer that he despite having a hyperactive bladder hardly moves out of the operation table for 10-14 hours without even thinking of going to the loo. When the two lives are under the knife, nothing is worth consideration.

“It was the most unforgettable moment,” Evrensel, the mother of the twins, said describing the rollercoaster of emotions when she finally met her kids post-separation. “When I was going there it was like I was on a cloud.” The twins were released from the hospital in June 2020 and are doing well at their home back in Turkey, with their family after going through a period of recovery and intense physical therapy at GOSH.

An Innovator

Getting into challenging jobs helps experts understand the nitty-gritty of complexities involved. The super speciality that Owase’s GOSH team is involved with has helped them identify certain areas where technology has a role. The team locates problems and thinks about the solutions. At GOSH, between 2012 and 2018, they introduced state-of-the-art technology and surgical techniques and discovered innovative ways of advancing clinical care and research.

The GOSH team that separated Safa Marwa. Dr Jeelani is in the second row.

This has given Dr Owase Jeelani another identity – apart from being a super surgeon and philanthropist, as that of an inventor and entrepreneur. He is wearing many caps. Right now, he is the Principal Investigator at FaceValue, a research team of doctors, scientists and engineers that design surgical devices and machine-learning algorithms to predict and improve surgical outcomes.

“I have always been of the belief that we must never restrict our mind to a particular subject,” Owase said. “We should always try to transcend the limit and aspire to achieve higher. Face Value was started under the same ethos. The group uses Engineering and Artificial Intelligence (AI) platforms to undertake work in craniofacial morphometrics, biomechanics, surgical devices and clinical outcomes.”

The main objective at the Face Value, he said is to make the surgeries less invasive and explore medical options other than surgery. “In case, the surgery is inevitable, we aim to make it minimal and safer for the children,” he said.

Under the Face Value programme, Owase’s team of engineers has designed CranioXpand, a spring distractor system for minimally invasive craniofacial surgery. The device has proved to be very successful in craniofacial surgeries.

“While operating on children’s skull, we were supposed to remove all the bones of the skull and then rearrange them,” explains Owase. “The process was time-consuming and resulted in a lot of blood loss. I felt the procedure was very excessive for a child. To rectify this, we designed CranioXpand, a spring distractor system. The procedure which would normally take six hours, we now are able to complete it within 40 minutes, with a minimal access incision.”

Uninterrupted Learning

Over these years, Dr Owase Jeelani and his team have come across many cases. Every new case comes with its own complexity and challenge as a result of which new experience is gained. Over time, their team kept on expanding, which now includes doctors, surgeons, engineers, computer specialists, physiotherapists, and psychology experts. “We even make use of artificial intelligence at times. Our focus is to find out the best course of action for a child while predicting the outcome of each possible procedure,” Owase said. “So far we have dealt with six conjoined twins and in such cases, one must be able to hone the skill of prediction algorithm.”

Every year around 10 sets of conjoined twins are born worldwide. While Dr Owase Jeelani and his team come across only one case a year, the lives of the rest 18 children either remain neglected or face an unsuccessful surgical intervention. “With an aim of reaching out to almost all 10 sets of conjoined twins, we are working to develop a knowledge repository to disseminate the knowledge and experience of the team across the globe,” Dr Owase said. “We are helping doctors outside to gain knowledge from our experience and have an access to our expertise.”

A Proud Kashmiri

“I believe Kashmiris have the potential of achieving anything and everything in the world,” Dr Owase said. “We just need to keep a positive attitude. At the same time, we must not make our luck or the geo-political tensions a reason for not doing things that we want to. We must not limit ourselves to anything at all. A prejudice-free mind can help us transcend all the limits which bound us.” This, however, does not mean that Kashmiri are exclusive. “I don’t mean that we are superior to other nations but yes we are no lesser,” he insists.

What is interesting, however, is that despite being a global citizen and a world acclaimed professional for separating twins, Dr Owase Jeelani has failed in separating himself from Kashmir. Everywhere, when he is being asked about who he is, he says Kashmir crops up.

“It’s been 32 years since I left Kashmir,” Owase, who briefly studied at Burn Hall, said. “But I have never been able to detach myself from my motherland because it is not just a place, Kashmir is a feeling. All through my career, I have represented Kashmir. Even after 100 years, Kashmir will be my home and I will be a proud Kashmiri forever.”

Post Script

Dr Jeelani’s team coordinated with a team from Brazil in separating one of the most complex sets of siamese twins who had their brains fused in the joint skull.

Bernardo and Arthur Lima were admitted to a hospital in Rio de Janeiro for nearly two years and the hospital and the family finally got in touch with Dr Owase at GOSH in Lonon. This exercise of separating the two was sppored by the NGO, Gemini  Untwined. For months, the two teams of doctors studied every detail of the anatomy and then finally decided to go for the intervention.

This surgery differed from all earlier cases involving twins with fused skulls. This was for the first time that twins aged more than three years old were separated. The conventional wisdom is that brain injuries heal better in the case of kids aged below one. This was the second such surgery that was undertaken outside London, the earlier one was in Israel. This was for the first time that the doctors put t use Virtual Reality in understanding and predicting the outcome of a crucial procedure. Finally, this surgical procedure is said the most challenging one that was ever attempted.

“All simulations were done in virtual reality,” Dr Jeelani said. The two teams of doctors – in London and Rio – spent months in trial techniques using virtual reality projections on CT and MRI scans. Dr Jeelani terms the surgery as “space-age stuff” envisaging surgeons separated by  7000 km wearing headsets and operating in the same “virtual reality room” together. “It’s just wonderful, it’s really great to see the anatomy and do the surgery before you actually put the children at any risk,” Jelani said. “You can imagine how reassuring that is for the surgeons…In some ways, these operations are considered the hardest of our time, and to do it in virtual reality was just really man-on-Mars stuff.”

The separation of the twins was more than 33 hours long operation. The final operation for which Dr Jeelani flew to Rio continued for around 17 hours. During this procedure, he took four 15-minute breaks. Dr Jeelani was assisted by Dr Gabriel Mufarrej, who heads paediatric surgery at Instituto Estadual do Cerebro Paulo Niemeyer.

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