Adnkronos Milan, June 23 (Adnkronos Salute) – A highly complex medical undertaking, culminating in the separation of two 2 and a half year old Senegalese Siamese twins affected by a very rare form of total vertical craniopagus, saw Smile House Fondazione Ets "at the forefront as promoter and coordinator of an exceptional international and national cooperation network". The operation, "which lasted 48 consecutive hours at the Fondazione Irccs San Gerardo dei Tintori in Monza, represents a milestone in pediatric craniofacial surgery".
This is how Smile House describes the operation performed on two girls who "presented one of the rarest and most complex forms of cranio-encephalic fusion, with an extended connection between the bones of the skull, the brain tissues and the vascular system". Craniopagus twins - the Foundation specifies - represent approximately 1 case in 2,5 million births, with less than 60 separation operations recorded from 1950 to today, of which less than 15 involved total vertical forms. The rarity and exceptionality of this procedure are underlined by the fact that the last similar operation in Italy dates back to 2017, at the Bambino Gesù pediatric hospital in Rome.
The Italian team at the San Gerardo hospital – explains Smile House in a note – has assured its availability to make its facility and its health workers available, despite the high degree of complexity of the health services and the many critical issues related to the diagnostic, therapeutic, surgical, assistance and rehabilitation pathway. This surgical intervention represented the final phase of an innovative 10-month path, divided into various stages of progressive cerebrovascular separation and a complex multi-tissue reconstruction. The multidisciplinary team, supported by American and European specialists with experience in similar cases, used 3D virtual simulations and collaborated with other Lombard excellences such as the Besta Neurological Institute, the Policlinico of Milan and the Papa Giovanni XXIII of Bergamo. The Clinical Ethics Committee was constantly involved for an adequate bioethical analysis of the complex situation.
Despite the extremely high risk and the precarious clinical conditions of one of the two girls, T., the goal of the 'vital' separation for both was pursued with tenacity. Unfortunately, little T. did not manage to overcome the final phase of the operation. D., on the other hand, survived the very delicate operation and is now in neurological intensive care, with "progressive improvements that will allow her for the first time to embark on a path towards motor autonomy", the health workers predict.
The twins T. and D. – the note reconstructs – arrived in Italy in July 2024 thanks to a flight organized by the Italian Air Force and the transport of Area, a journey made possible by the reporting and joint commitment of Smile House Fondazione Ets and the World Craniofacial Foundation. Both active for decades in the treatment of children affected by craniofacial malformations, they identified in the Fondazione Irccs San Gerardo dei Tintori of Monza the ideal partner for its high expertise in the pediatric neurosurgical and craniofacial field.
The choice of San Gerardo was not accidental: as of December 13, 2023, the Fondazione Irccs San Gerardo dei Tintori and Smile House Fondazione Ets signed a memorandum of understanding that sanctioned the creation, within San Gerardo, of a center called Smile House. This center is part of the larger Smile House Network, made up of 8 centers throughout the country (4 surgical hubs in Rome, Vicenza, Pisa and Monza, and 4 outpatient Spokes in Cagliari, Taranto, Ancona and Catania), created thanks to consolidated partnerships with structures of the National Health Service. The San Gerardo center is dedicated to the multi-specialist assistance of patients, Italians and foreigners, affected by craniofacial malformations, from prenatal diagnosis to the end of psycho-physical development. This network is based on a memorandum of understanding with the Ministry of Health, active since 2008 and renewed in 2022, which defines the programmatic framework to guarantee a complete care pathway, from prenatal diagnosis to adulthood, and to promote scientific research on technologies, protocols and causes of malformations.
"All of us, doctors and nurses at the San Gerardo Hospital, have had the opportunity to take care of these two little girls and their family, facing together a long and complex journey to treat a rare and very serious cranio-encephalic malformation – stated the doctors and nurses at the IRCCS – For over 10 months, the entire team has worked with skill, dedication and a spirit of collaboration, with the aim of offering both twins the same chances of survival and quality of life. We express deep gratitude to the family for the trust and strength shown, to the international associations that have made this project possible, and to all the professionals who have collaborated with commitment in this journey that is as complex as it is humanly and professionally extraordinary".
The success of the complex operation of the Siamese twins - the note continues - is the result of a further memorandum of understanding signed by Smile House Fondazione Ets with the World Craniofacial Foundation and the Mouhamad Rassoul Dieng Foundation. This agreement has allowed us to channel skills, resources and commitment towards a common goal. The Mouhamad Rassoul Dieng Foundation has made this journey possible, allocating a contribution of 3 million euros, as a testimony of the trust placed in the organization of Smile House Fondazione Ets and in the medical excellence involved.
"The story of T. and D. is also the story of a family that found welcome and support. The Maria Letizia Verga Foundation provided hospitality to the parents, demonstrating once again the importance of a solidarity network that goes beyond the purely medical aspect", Smile House emphasizes. A support testified by the mother and father of the twins. "Since we arrived, along the entire journey - they said - we have met exceptional people. From the beginning all the staff, doctors and nurses, have worked to reassure us, hour by hour, minute by minute, about the situation. All the people we have met have been extraordinary in helping us face this ordeal, and we have perceived that they truly loved our girls. In simple words, an emotional bond has been created with them. Even in the moment of great pain, with the loss of Rama, the tenacity of the doctors in treating us has given us the strength and courage to face that loss".
"Right away - the parents added - we perceived a total welcome: on a human, cultural level and in the availability shown. They gave us great confidence, because in difficult moments we were sure that the girls were in safe hands. We did not express our discomfort because we saw that the staff was also experiencing it with us: for all of them, the girls had also become 'their girls'. They showed an almost maternal love towards them. During this whole period they cared about our needs, even material ones, asking us if we had eaten, if we were sleeping well. We were welcomed 360 degrees, even in our most personal needs. The staff - starting from Amal, Mimmo, Claudia, up to all the doctors and nurses - became a family: here they have truly replaced ours".