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BBC story on Safa and Marwa

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Press release

CHARITY LAUNCHED TO SUPPORT SEPARATION OF CONJOINED TWINS FOLLOWING LANDMARK SURGERY IN LONDON

Gemini Untwined will fund treatment and further our understanding of craniopagus conjoined children around the world

Launch follows successful separation of previously conjoined twins in London in February 2019

New technologies of advanced medical imaging, accurate modelling, virtual reality and 3D printing enabled the surgeons to model the structure of the twins’ skulls and make exact and realistic preparations

London – 16th July 2019: The surgeons behind the life-changing separation of a set of craniopagus conjoined twins at London’s Great Ormond Street Hospital have launched a new charity – Gemini Untwined – to support similar pioneering operations in the future.

Gemini Untwined will raise funds to carry out medical and scientific research into, and the treatment of, conditions potentially requiring craniofacial or neurosurgery. This includes craniopagus conjoined twins who are born joined at the head with a fused skull and separate bodies.  Fifty such sets of twins are estimated to be born around the world every year of which it is thought only 15 survive beyond the first 30 days of life.  With current technologies, approximately half of these cases would be candidates for successful surgical separation.

The charity is being set up by paediatric neurosurgeon Mr Noor ul Owase Jeelani and consultant plastic and reconstructive surgeon Prof. David Dunaway. The pair led the team at Great Ormond Street Hospital behind this year’s successful separation of previously conjoined twins Safa and Marwa who were born in January 2017 in northern Pakistan.

Safa and Marwa were brought to the UK in August 2018 aged 19 months following a request for help to Mr Jeelani from a neurosurgeon in Pakistan. Following three major operations and a number of smaller procedures, the sisters were successfully separated on 11th February 2019. The surgeries were funded by a private donation.

Gemini Untwined, which is independent of Great Ormond Street Hospital, will raise desperately needed funds to help craniopagus twins around the world lead fulfilling and independent lives. Funding will provide the financial and logistical support to bring twins to the UK and provide them with the expertise of world-class surgeons and cutting-edge research. As the optimum time for separation to take place is between 6-12 months of age, the charity will ensure that children do not have to wait for funding and logistical reasons which can delay separation and compromise recovery.

Commenting on the launch of the new charity, Mr Noor ul Owase Jeelani saidThese are rare, difficult cases and the lack of funding and logistics can compromise outcomes for these children.

“Gemini Untwined will ensure families who find themselves in such an impossible situation have access to the world class expertise and facilities needed to maximise the chances of a successful outcome for their children.”

Prof David J. Dunaway added: “Craniopagus is an exceptionally rare and complex condition. Gemini Untwined has been established to ensure access to world class care for craniopagus children and to help our understanding of the challenges in treating this condition.”

The surgical team is one of the world’s most experienced in this area, having managed the separation of two previous sets of craniopagus twins in 2006 and 2011. Mr Jeelani was the lead neurosurgeon for the last two sets of twins, while Prof Dunaway led the craniofacial reconstruction for three previous sets. During this time, techniques for separation have moved on considerably. Previously, separation would have taken place during one 30 plus hour operation. Today, the process includes several surgeries with recovery time in between using the body’s natural healing properties to assist in a gradual separation process.

Safa and Marwa’s separation earlier this year was aided by state-of-the-art technology not available during previous operations. For the first time, the team used virtual reality, advanced imaging and three-dimensional rapid prototyping to prepare for the operation. This technology was developed in house at Great Ormond Street Hospital while the graphics were produced by London special effects company Glassworks, which has previously worked on films and television programmes including Bandersnatch and Black Mirror. This technology will now be used in future medical procedures including complex craniofacial reconstructive cases.

These cutting-edge scientific techniques greatly increased the chance of success for Safa and Marwa. Their brains were more intertwined than the previous sets of craniopagus twins making it the most complicated separation to date. Thanks to the new technology, the team used images of the girls’ brains and blood vessels to plan and practice the surgery in advance to minimise complications.

Five months after their final operation, Safa and Marwa are making slow but steady progress. A further period of recuperation and rehabilitation is essential to maximise their recovery. Gemini Untwined continues to support their ongoing rehabilitation and care.

Gemini Untwined will also aim to advance the health and promotion of the physical, material, mental, and financial welfare of children and their families.

– ENDS –

For media enquiries please contact, Caroline Nagle, Lydia Willgress or Julie Cummings, Lexington Communications, Tel:  0207 025 2300; 07961 157 388 or 07920 828 768; email: gemini@lexcomm.co.uk

Images of the twins, Safa and Marwa, are available on request.

Notes to Editors

  1. For more information on Gemini Untwined please visit www.geminiuntwined.org
  2. Gemini Untwined acquired charitable status with the Charity Commission on 14 June 2019. The purpose of the charity is the advancement of health and the promotion of the physical, material, mental, financial welfare of children and the families of children with conditions potentially requiring craniofacial or neurosurgery, including (but not limited to) conjoined twins. The charity will carry out its purposes by funding medical and scientific research into, and treatment of, conditions potentially requiring craniofacial or neurosurgery.
  3. The Directors of the charity are Professor David Dunaway, Professor Richard Hayward, Edward Kiely, Noor ul Owase Jeelani, Kamal Rahman and Andrew Savile.
  4. Mr Noor ul Owase Jeelani is a Consultant Paediatric Neurosurgeon and has worked at Great Ormond Street Hospital for Children (GOSH) part time since 2000 and full time since 2009. He was the Head of Neurosurgery from 2012-2018 and holds an Honorary Associate Professorship at the Institute of Child Health, University College London. He was listed as amongst the Top 100 surgeons in the UK by the Times magazine in 2011.
  5. Prof David Dunaway is a Consultant Plastic and Reconstructive surgeon, and Head of the Craniofacial Unit at Great Ormond Street Hospital (GOSH).  He is a Professor of Craniofacial Surgery at UCL Great Ormond Street Institute of Child Health. Prof Dunaway was awarded a CBE in 2016 for his work advancing craniofacial surgery in the UK and his charity work in Africa.
  6. Professor Richard Hayward and Edward Kiely are pioneers in the development of techniques to separate twins at Great Ormond Street Hospital.  Richard Hayward led the neurosurgical separation of the first set of craniopagus twins at GOSH.
  7. Law firm Mishcon de Reya and strategic communications agency Lexington Communications have both acted pro bono for Gemini Untwined.

Acknowledgements

Safa and Marwa’s operation was made possible through kind donations from Murtaza Lakhani and The Bamford Charitable Foundation.

Photography: https://www.depthandfieldphotography.com

Copyright © 2019 Gemini Untwined. Gemini Untwined is a Registered Charity (England and Wales): 1183901 Company Number: 11668434
Registered Address: Mishcon De Reya LLP, Africa House, 70 Kingsway, London, WC2B 6AH
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