‘I Wanted These Children to Have the Childhood That Was Denied to Me’

As the Kashmir situation deteriorated in the 1990s, Noor ul Owase Jeelani was flown out to London by his parents. He studied medicine and specialised in paediatric surgery. Thirty years later, Dr Jeelani is a rare super-specialist who handles the most complicated and hugely expensive separation of twins conjoined in skulls. After the sixth successful surgery, Dr Jeelani talked to Masood Hussain and  Humaira Nabi about how Artificial Intelligence, robotics and virtual reality is helping surgeons to predict the outcomes in hitherto untouched complicated cases

KASHMIR LIFE (KL): So what are the new goalposts in paediatric neurosurgery?

DR NOOR UL OWASE JEELANI (NOJ): I believe that the colossal knowledge that pervades our lives stems from a single body of knowledge. Every specialist studies a subset of this knowledge and gains expertise over time. As a result, the fundamental guiding principles of all forms of science are the same and apply universally. So, I believe the future of Paediatric Neurosurgery will be similar to that of other medical specialities.

Every day, we encounter facts; some are true, while others are distorted or incorrect. Future events can be easily predicted if one can distinguish between them while also trying to limit distortions and biases. In neurosurgery, over the past many years, we have also tried to accurately contemplate facts by minimising biases and inaccuracies so that we could predict the future of neurosurgery. When dealing with children in paediatric neurosurgery, we can predict the outcome of our treatment process by applying the same principles.

KL: Not many people know of your long journey from Srinagar to England.

NOJ: I grew up like any other Kashmiri kid. I vividly remember my childhood as being the happiest part of my life. I was 15 when things took an ugly turn in Kashmir. While most Kashmiris stood their ground, few migrated to other parts of the world in anticipation of a better future and I was one of them. My parents decided to send me to England because my aunts already lived there. It was a very traumatic experience for a 15-year-old kid to be detached from his family, friends and homeland. The event raised a lot of existential questions for quite some time but I remained determined to make the best out of the pain and channelize my energy to make the world a better place. Since changing the lives of every single human for the better seems impossible, I focused on a single person, a child in particular. 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.

I continued my studies in England. I received a lot of encouragement from my teachers, who sensed my potential in me very early. After I completed medical school, I specialized in paediatric neurosurgery. I have been working in the Great Ormand Street Hospital (GOSH). for the past 22 years. When I joined here, I saw parents and children coming, hopeful of a better future, I felt that I have returned to my homeland. It was then that I decided to stay and serve here.

Super Surgeon Dr Noor ul Owase Jeelani with Bernardo (left) and Arthur, and parents Adriely and Antonia Lima. The twins with fused brains were separated in last few days of July.

Over these years, I came across many cases, every case being a source of learning new things. Over time, our team kept on expanding. Our team including doctors, surgeons and nurses now encompass engineers and computer specialists. 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. So far we have dealt with six conjoined twins and in such cases, one needs we must be able to hone the skill of prediction algorithm.

KL: While separating the complicated twins conjoined at the skull, what are the issues you actually deal with?

NOJ: We treated our first case of conjoined twins in 2006, but that was not done under media scrutiny at the parents’ request. The surgery was deemed successful. The girls, who are now 16 years old, are doing well in their lives. Rital and Ritag, the famous Sudanese twins, were our second case of craniopagus twins to deal with in 2011. After their doctor-parents contacted (GOSH), 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. It took us four months to complete the series of procedures. Both the girls, now 16, are doing well.

Craniopagus cases are complicated but some are comparatively more complicated. The first two cases were on a relatively milder spectrum. As we proceeded with our cases, the more complicated cases came. The experience we gained in 2006 and 2011 helped us to handle the case of Safa Marwa, the Pakistani conjoined twins, in a much better way. Then Turkish conjoined twin brothers Yigit and Derm were separated. Recently Israeli twins were operated upon in their own country because of the availability of required medical infrastructure.

So, with each case, our learning curve increased. Had we come across our recent case from Latin America earlier, things might have been a bit different. Because this case by far is the most complicated case our team has dealt with. Over these years we also applied a multidisciplinary approach.  So it’s an ongoing journey.

KL:  What are the possible complications that craniopagus twins could face post-surgery?

NOJ: The surgery of craniopagus twins is very complex and there is a great risk of serious complications. There is even a chance of the death of one or both kids. So, we thoroughly assess the possible complications, which might follow the surgery and discuss it with their parents.  If we sense a greater risk for the kids, we give it a pass. However, if there is less probability of any serious complications, we go ahead.

A child’s brain has very high plasticity. It has a mechanism to compensate for lost function in the event of a brain injury. A child can recover more quickly from a brain injury than an adult. So, the surgery should preferably take place under one year of age, so that the brain is able to cope-up with it.

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

KL: The Pakistani twins Safa Marwa underwent surgery when they were eighteen months old, right?

NOJ: Safa Marwa’s case was very complicated. With no means of charity at that time, I fundraised for them which was time-consuming. As a result, their surgery suffered delay, which wasn’t good for the girls. The twins were almost two years old when we started their surgery, so their outcome is not so good because of the delayed treatment. Now four years old, the girls are not able to do all the things that a normal four-year-old could.

KL: So a charity funds these surgeries?

NOJ: With a high success rate in the surgeries, 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 time it’ll take to fundraise. So, in 2018 I along with my team at GOSH launched a new charity – 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.

KL: What is the cost estimation of these surgeries and how much time does it take for the surgeries to complete?

NOJ: Small-scale surgeries take approximate of 12 hours while the complicated ones can last up to 27-28 hours. These children undergo multiple surgeries because of the high-risk value. The twins are separated in 4-5 surgeries. Each surgery is followed by a healing period of a few weeks. While this staged technique is quite safe, it at the same time, is very expensive. With high medical expenses, each surgery costs around 1one to two million pounds (Rs 10-20 crore). All the money is used to bear the medical expenses of the hospital only. None of our team members charges any money for the surgery.

KL: Apart from being an outstanding surgeon, you are an efficient innovator as well. Tell us about your FaceValue initiative.

NOJ: I have always been of the belief that we must never restrict our minds to a particular subject. We should always try to transcend the limit and aspire to achieve higher. While teaching at medical schools, I tell my students to read history so that they learn from the mistakes of our ancestors.

FaceValue was started under the same ethos. The group uses Engineering and AI platforms to undertake work in craniofacial morphometrics, biomechanics, surgical devices and clinical outcomes. While operating on children’s skulls, we were supposed to remove all the bones of the skull and then rearrange them. 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, I along with a team of engineers, under the FaceValue programme, designed CranioXpand, a spring distracter system for minimally invasive Craniofacial surgery. The device has proved to be very successful in these surgeries. The procedure, which would normally take six hours, now is completed within 40 minutes, with a minimal access incision. CranioXpand is one of the many devices we have come up with at FaceValue.

Our main objective at FaceValue is to make the surgeries less invasive and explore medical options other than surgery. However, if surgery is inevitable, we aim to make it minimal and safer for the children.

KL: What is the status of conjoined twins worldwide, especially the ones who don’t find required medical attention?

NOJ: According to our estimate, every year around 10 sets of conjoined twins are born worldwide. While our team comes across only one case in a year, the point of concern is what happens to the rest 18 children. I don’t think anybody can answer that. However, we know that the separation surgery of these twins takes place at places, which unfortunately turn out unsuccessful. While we are helping the children, who reach out to us, live better lives, we at the same time are working to develop a knowledge repository. This will help us in helping other doctors gain knowledge from our expertise and experience.

KL: Since your speciality is evolving, is there any chance of robotic intervention in your surgeries?

NOJ: There is a great scope of Robotics in the medical profession. Robotic-assisted surgeries are more accurate and minimally invasive. However, throughout the course of surgery, the surgeon is in charge. The surgical robots work clearly under the guidance of a surgeon. In our GOSH team, there are eight surgeons including a robot, which we bought in 2016. In the next 10-20 years, we expect Artificial Intelligence (AI) and robotics to play a very significant role in the medical profession.

KL: You have said your recent operation of the Rio twins was the most complicated one?

NOJ:  Yes. The successful separation of Bernardo and Arthur is a remarkable achievement by the team in Rio and a fantastic example of why the work of Gemini Untwined is so valuable. Not only did we provide a new future for the boys and their family, but we have also equipped the local team with the capabilities and confidence to undertake such complex work successfully again in the future. The 33-hour-long operation that separated the three-year-old twins involved a series of seven procedures and involved a large team of 100 surgeons, engineers and other staffers. We spent months trialling techniques using virtual reality projections of the twins based on CT and MRI scans. It was just wonderful, it’s really great to see the anatomy and do the surgeries before you actually put the children at any risk. 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 twins had fused brains and this was our most complex case to date.

KL:  You did not tell us anything about your early education in Kashmir?

NOJ: My parents used to travel a lot, so I was home-schooled for the first 10 years of my life. I got admission to a local school called Woodland. Later, I studied at Burn Hall School up to the tenth standard. I completed the rest of my studies in England.

KL: Is there any plan to reconnect with Kashmir?

NOJ:  I still have some family and friends in Kashmir. It has been 32 years since I left Kashmir. But I have never been able to detach myself from Kashmir because it is not just a place, it’s a feeling. All through my career, I have represented Kashmir throughout. Even after 100 years, Kashmir will be my home.

KL: Is there any plan of reaching out to the local medical fraternity in Kashmir?

NOJ: Yes, I plan to work with the medical fraternity in Kashmir, in near future. As of now, we have selected some doctors under various fellowship programmes. The doctors who have already worked with us here in London are doing very well in Kashmir and are heading different departments in various hospitals in Kashmir.

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