Brothers Yiḡit and Derman were just 17 months old when they were brought to Great Ormond Street Hospital (GOSH). Born craniopagus, meaning conjoined at the head, their incredibly rare condition required the unique facilities and expertise of GOSH - one of the only sites in the world able to separate and care for craniopagus twins.
The intricate process of separating Yiḡit and Derman was carried out in four separate surgeries over two months, totalling approximately 40 hours and led by two world-leading surgeons: neurosurgeon Mr Noor ul Owase Jeelani and craniofacial surgeon Professor David Dunaway.
Alongside them, a 100-strong team of neuro 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 ongoing rehabilitation is a success.
Hear from just some of the multi-disciplinary team who were involved in their care:
A 3D Exploration
A 3D exploration
Craniopagus twins are extremely rare and each set of twins has unique anatomies. Understanding these anatomies is crucial in reducing risk during what is a very complex surgical separation procedure.
To support this, Craniofacial and Paediatric Plastic Surgeon and Head of 3D printing, Dr Juling Ong, carried out 3D analysis of the twins before and during their procedure:
“Using 3D models, created from multiple different scans, helped us to understand their anatomies in greater detail and in a way that is very accessible. We needed to be able to make an informed decision on where to divide their shared blood supply — this was the biggest decision the neurosurgery team had to make.” Juling explains.
“Having the 3D models and breaking down what is an extremely complex operation into stages helped simplify and reduce the risk of getting lost in the anatomy during surgery. It allowed us to prepare and practice multiple times virtually before actually operating on the patients. In particular, it made the operation quicker because you know what to do and how to dodge or handle the difficult bits - you have a plan to carry out, and you can be more confident of your incision. It’s a really key part of the treatment plan and my hope is to always make it an integral part of care.”
The 3D modelling process saw Juling working with neurosurgeons, plastic surgeons, radiologists and a 3D engineer to create the most accurate and clear picture possible of the twins’ anatomy. Luke Smith, 3D Engineer at GOSH, shares how the models were developed:
“The models start out as a CT or MRI scan. We then convert them into a 3D model. The family’s local hospital were able to send over their scans of the twins, so we could create the models and start preparing before they even arrived at GOSH.
“3D printing has been used in medicine for a good number of years, but not so much adopted in-house, and this is where it has been really beneficial for everyone at GOSH. It really allows for collaboration between teams."
Taking a (virtual) look
Taking a (virtual) look
Using medical scans and 3D models, Claudio Capelli, Research Lead at GOSH, was able to create an exact replica of the boys’ heads in Virtual Reality (VR) software, allowing clinical teams to explore and better understand their complex anatomy.
Claudio explains: "VR was used to aid the surgeons in understanding the complex anatomy of the twins and their intricate connections. The blood vessels in particular are a complex branching network which are difficult to picture in your head before going to theatre. The surgeon used VR to inspect blood vessels under the virtual skin, which helped in deciding the best location to separate them.
"With the use of a headset and controllers, the user can not only view these models from any possible perspective, but also interact with them. All of this extra information contributed to a better understanding of the anatomy in such a complex case.”
Orchestrating the theatre
Once a date for surgery was decided, Craniofacial Theatre Team Leader, Maria, set to identifying the multi-specialty staff needed to participate in the highly complex theatre.
“In January 2020, I was a newly appointed Theatre Team Leader for Craniofacial. The Matron and the Neurosurgery Theatre Team Leader had been involved in a previous conjoined twin separation, so I was lucky to be able to shadow them.
"There was a lot of organisation, planning and preparation involved in theatres. We made sure that we had the appropriate skill mix to staff the surgery in its several stages as well as specialised instruments and equipment readily available in case needed. We also needed to make sure that both the patients and staff were well looked after during theatre and organised that the team had appropriate breaks.
"It has been a privilege to work amongst experts in the field. I have learnt a lot from them. It is heart-warming to see Yiḡit and Derman as separate individuals – it was a huge operation and I pray that they stay healthy and that they grow to become productive individuals in the future."
Yiḡit and Derman's surgery was lead by two world-leading surgeons: neurosurgeon Mr Noor ul Owase Jeelani and craniofacial surgeon Professor David Dunaway. They reflect:
“Only one in every 2.5 million births are craniopagus twins and this condition is even rarer in boys. Because of where they were joined, Yiḡit and Derman’s quality of life would have been severely affected without separation. Conjoined twins are also at greater risk of cardiac problems when they share blood vessels.
“The experience of the team at GOSH and the availability of cutting-edge equipment meant the boys’ successful separation could be achieved over a far shorter time period than was possible with previous sets of craniopagus twins we’ve treated. This was possible because of meticulous planning and collaboration that drew on the expertise of GOSH specialists from across more than 15 disciplines. The multidisciplinary approach was vital to the success of the surgery.
“The 100-strong team at GOSH who have been responsible for the boys’ treatment and care have shown immense dedication, compassion and expertise throughout this challenging seven-month journey. GOSH really is one of the few places in the world that has such a wide range of expertise and the specialist infrastructure available to make a successful separation like this possible.
“We’re delighted to have been able to help Yiḡit and Derman and their family. Their strength throughout this process has been inspirational and we are hugely proud of them all.”
Progressing through therapy
The boys undertook daily physiotherapy and occupational therapy sessions to support their rehabilitation following surgery. Carey Eldred, an Acute Neurosciences Physiotherapist and Kerry Brown, Acute Neurosciences Occupational Therapist at GOSH explain how important this has been:
"Understandably, multiple highly complex brain surgeries had a major impact on the boys' bodies. This resulted in changes to their vision, some muscles becoming stiffer and others harder to activate. Therefore, sitting up, crawling, standing, using their hands and legs and gaining functional skills needed intensive rehabilitation with daily input from therapists.
"Physiotherapy intervention specifically focused on developing motor skills such as ways to move, their posture and balance, and thinking about control of skills such as sitting, standing and walking."
Occupational Therapists focused on developing functional skills for the boys, such as sitting, eating, dressing, playing.
Kerry in the Occupational Therapy team explains "We used play to assess Yiḡit and Derman’s cognitive skills, problem-solving, motor planning, attention and concentration. Our goal for them is to gain function in daily tasks as expected for their age."
Carey adds "We have worked closely with the fantastic nursing, medical and surgical teams on Bumblebee and Koala wards, the speech and language therapists, dieticians, tissue viability and craniofacial nurses."
Moving from strength to strength
"Derman and Yiḡit's parents, Fatma and Omer, were fantastic not only taking on the parenting role, but were hands-on, encouraging each boy during each therapy session. They would often demonstrate a new skill learnt over a weekend or an evening as they continued to work independently with their children.
"On a personal level, we been delighted to see how the boys’ individual personalities have developed and have been able to use this to engage with them and personalise their therapy sessions. Yiḡit is thoughtful, bright and sensitive quietly observing everything that happens. Derman is always on the move and commands the room, encouraging praise for each task with a massive smile and proud clapping!
"Both boys are happy, confident and resilient and we know they will go from strength to strength in the future."