A New Hope for Conjoined Twins

September 2, 2019

 

Earlier this summer, the neurological team at Great Ormond Street Hospital in London were able to perform an unprecedented operation - the separation of two craniopagus (meaning joined at the skull)  twins, Safa and Marwa. The head surgeons behind the operation, Mr Noor ul Owase Jeelani and Professor David Dunaway, are now starting a charity to fund further research into conjoined twins and help make these kinds of operations easier and more common - Gemini Untwined

 

Conjoined twins occur (we think) when a fertilized egg in the womb doesn’t separate properly, or when two fertilized eggs bump into each other. The operation to separate them must occur very early on in the twins’ lives as if they are not separated they run the risk of dying before even achieving maturity. The way it works is the following: first, an assessment of the situation is made, followed by a detailed plan of the operation(s). Then, the blood vessels and tissue are separated and a plastic plate is placed between them. At this stage in Safa and Marwa’s operation, water collected in their brain, pushing the remaining tissue and nerves apart. This is, as of yet, a miracle, but if the doctors can figure out how it happened, they can ensure it does at every operation. The water made the next stage much easier for the surgeons and safer for the girls: the expansion of the skin, separation of the skull and the readjustment of the skin over the now separated heads. 

 

 Safa and Marwa pre-separation. Courtesy of Gemini Untwined.

 

Speaking at a press conference at the Royal Society of Medicine, the two physicians explained that there are about 50 such sets of twins born every year (which makes up 5% of all the conjoined twins), though only about 15 survive early infancy due to the extremity of their condition - their skulls are fused, their brain matter and blood vessels completely intertwined. Since 1952 there have been only around 60 attempts to separate those afflicted, all with a low survival rate. This is why the operation at Great Ormond Street is such a landmark - the team of physicians have been able to separate 3 sets of twins in a row, the world’s longest series of such operations. But the knowledge they have gained will help not only surgeons operating on craniopagus twins but all minor and major separations of tissue or bone.  

 

 Professor Dunaway and Mr Jeelani, the lead physicians. Courtesy of Gemini Untwined.

 

One of the reasons this operation was so successful was the collaboration within the team of people who were working on it - around 100 surgeons, physicians, software engineers, physical therapists and nurses. The hospital even joined forces with Glassworks, a company that usually does animation for Netflix, who, with the help of X-rays, CAT-scans and Artificial Intelligence, were able to construct detailed 3D models of the girls’ brains. These models, though daunting at first as the neurosurgeons saw that there were many more blood vessels and nerves to be reconned with than they had anticipated, were instrumental in helping them to understand and separate the twins. Professor Dunaway and Mr Jeelani believe that this is the future of medical work - a collaboration between different areas of expertise that leads to a more successful medical practice. 

 

 The 3D model constructed by Glassworks. Courtesy of Gemini Untwined. 

 

Gemini Untwined, the charity that the lead physicians are starting, is meant to improve the logistics, awareness and funding around craniopagus (and other conjoined) twins. “This”, smiles Mr Jeelani, “is what I believe British medicine is all about”: providing a knowledge base so that other countries can facilitate in-country assessments of the twins’ condition, aiding their transfer (if needed) to Great Ormond Street, where surgeons are trained to perform these kinds of operations, raising global awareness and hope for families with afflicted children and changing the way society looks at conjoined twins. After all, occasionally it’s safer for the twins to remain conjoined - as Professor Dunaway put it, “sometimes life is better together”. As for funding, the doctors are unsure about the exact figure that would help them cover the cost of these operations, but as this intensive treatment requires many operations over six to twelve months, they estimate it to be around half a million pounds. 

 

 Safa and Marwa post-separation. Courtesy of Gemini Untwined. 

 

For Safa and Marwa, who are just turning two, and their family, the process has been long and trying. The girls have gone through three major operations and a dozen minor ones and they seem to be making a remarkable recovery (though, as Mr Jeelani says, it is as yet too early to tell). Over the course of their treatment, the doctors have tried to give the advantage to the weakest twin (as usually, in these situations, one is using the brain matter of the other and therefore “stronger”), but focus on saving both of their lives. This, they are positive, is what ensured their success in all three operations, as opposed to other operations around the world that have sought to save just one twin (usually the stronger one). Though Safa and Marwa will be kept at the hospital for a while longer to make sure they’re ok before they can return to their home in rural Pakistan, the doctors are optimistic that they can go on to lead “fulfilling lives”.

 

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