In the annals of medical marvels, the story of conjoined twins stands as a testament to both the resilience of the human spirit and the incredible advances in surgical techniques. Conjoined twins, also known as Siamese twins, are a rarity, occurring only once in every 189,000 births. These extraordinary individuals are physically and thus usually mentally connected, sharing some organs, and inevitably facing unique challenges.
One of the most renowned cases of conjoined twins is that of Chang and Eng, whose lives spanned the 19th century. Born in 1811 in Siam (now Thailand), the brothers became famous after embarking on a successful world tour. Chang unfortunately suffered a paralytic stroke while touring the United States in 1870, and four years later, both brothers passed away. An autopsy revealed that their livers, much like their sides, were conjoined.
While the historical account of Chang and Eng highlights the awe-inspiring nature of conjoined twins, more recent stories shed light on the remarkable progress achieved in separating such twins. What was previously considered impossible, ridding young twins of hope for a normal life, has now become a reality for several pairs, now individuals worldwide.
The marvels of modern medicine and technology, as well as the unprecedented expertise and medical skill of today’s doctors, have been able to completely transform the lives of those most unfortunate, condemned to a troubled existence through no fault of their own. The magnificent tale of human triumph over one of the most severe physical impairments in our species’ history began with understanding how it occurs in the first place.
The root of misfortune
The origins of conjoined twins lie in the early stages of pregnancy, during the formation of identical twins or the development of fraternal twins. Contrary to what most may deem logical while pondering the matter, not all twins have a risk of becoming conjoined.
Fraternal twins, also known as dizygotic twins, are produced through fertilization of two completely separate eggs by two different sperm during impregnation. Differing from identical twins, who share the same genetic material, fraternal twins have distinct genetic compositions, just like any other siblings. Consequently, the occurrence of conjoined twins cannot be attributed to the same genetic factors that give rise to fraternal twins.
On the other hand, the development of identical twins holds the key to understanding the origins of conjoined twins. Identical twins, also referred to as monozygotic twins, form when a single fertilized egg, known as a zygote, splits apart to create two separate embryos. This division usually happens within the first two weeks of embryonic development. However, if the zygote division is incomplete during this critical period, it can result in the formation of conjoined twins.
The exact cause of incomplete zygote division leading to the condition is still a subject of scientific investigation. There are two prevailing theories that attempt to explain this phenomenon. The first suggests that if the division occurs after two weeks of embryonic growth, it may result in the fusion of the developing embryos, leading to conjoined twins. The second proposes that the division process may not be complete, causing the embryos to remain partially connected.
Conjoined twins can be classified based on the point of attachment and the body parts they share. The main medical term used to refer to their condition is the suffix ‘-pagus,’ meaning ‘fixed’ in ancient Greek. The most common types include thoraco-omphalopagus, where the bodies are fused from the upper chest to the lower chest, and thoracopagus, where the fusion occurs from the upper chest to the pelvis. The severity of the connection can vary, from shared organs such as the liver or digestive system to more complex unions, such as fusion at the head (craniopagus).
Splitting life from itself – a daunting thought
The tragic history of conjoined twins bears great fame and suffering, with very little to no true respite for the sufferers of this condition. However, it isn’t for lack of trying that humanity had to let them suffer. Separating most conjoined twins who are currently alive is still impossible, considering the unimaginably complicated reconstruction process of vital body parts that would have to be replicated.
Conjoined twins are typically fused along the trunk of their bodies or at the front, side, or back of their heads, and in the case of symmetrical twins, they may have no birth anomalies apart from the areas of fusion. The very nature of their physical union creates complexities that demand specialized skills, equipment, and a multi-disciplinary medical team.
Another disheartening fact is that most sufferers of this condition will never even have a chance to apply for separation. Medical statistics reveal that only a small percentage, approximately 7.5% of conjoined twins survive more than a few days, and the chances are even less for those who share organs. These sobering figures emphasize the tremendous risks associated with their separation, prompting most doctors and sufferers to stray from the very idea of surgery.
Successful separation procedures require meticulous planning, extensive preparation, and careful consideration of each twin’s unique anatomy. The medical team must navigate the delicate balance between preserving vital organs, ensuring the well-being of each twin, and minimizing potential complications.
More often than not, the sheer amount of excruciating mental concentration required to perform what is nothing short of a medical miracle, even by today’s standards, proves too great for a team willing to attempt the procedure. Such a congregation of experts is rarely present in the same premises, and it’s even rarer that the twins or their loved ones are able to afford the surgery.
The few times that these unthinkably complex medical masterpieces take place serve as a beacon of hope and faith in humanity, proving that our race is truly capable of taming the nature of the world and ensuring our triumph for millennia to come.
Separating the conjoined
Opposing common sense and even the most reasonable expectations, the first recorded case of conjoined twin separation dates back to the Byzantine Empire in 10th century AD. Famous historian Leo the Deacon detailed in his opus magnum the appearance of male twins joined at the sides, ‘from the armpit to the hip.’
It was revealed from several other chronicles that they arrived in Constantinople (today’s Istanbul) all the way from present-day Armenia, while emperor Romanus I Lecapenus (919-944) was on the throne. The twins captivated everyone who had set eyes upon them, becoming the subject of many myths perpetuated by the diverse beliefs of the Byzantine capital’s inhabitants.
These grown men were of outstanding physical and mental health, embraced around the shoulders at the joined side and using the free hands to walk with two sticks. After being expelled from the city due to many believing they were a bad omen, they proceeded to travel around the empire and garner significant attention.
In the 950s one of them succumbed to an unrecorded ailment, but the other was still alive and well. Various skilled doctors gathered around the twins and took on the challenge of saving the other’s life, performing the first known separation surgery. In spite of their best efforts, the remaining twin died three days later.
In 1987, Dr. Benjamin Carson made medical history by being the first surgeon to successfully separate occipital craniopagus twins. He led a 70 member surgical team, in a 22 hour operation that became a model for future surgeries of this kind. #BlackHistoryMonth #nsgy pic.twitter.com/RQWG1Q9sf0
— Alvin Onyewuenyi MPH/22NEURO (@22neuroMD) February 10, 2020
Elisabet and Catherina were the first conjoined twins to undergo successful separation surgery, performed by the renowned German surgeon Johannes Fatio in 1689. However, aside from the fact that they survived, not much else is known about their state before or after the surgery.
A much better documented case, and arguably one of history’s most famous in this regard, is the 1955 procedure by neurosurgeon Harold Voris at Mercy Hospital in Chicago, Illinois USA, whereupon craniopagus twin girls had their heads separated from one another. Although they both survived, it was determined eight years later that the shorter sister suffered severe and permanent impairment.
John Nelson and James Edward Freeman (Johnny and Jimmy)
Born on 27 April 1956, in Youngstown, Ohio, Johnny and Jimmy entered the world as omphalopagus twins, sharing a liver while possessing separate hearts. Up until that point, it was quite possible to imagine separating conjoined twins who shared some skin and bones together, but not a vital organ.
They became a new world record guided by the skilled hands of Dr. Bertram Katz at North Side Hospital in their birthplace, undergoing ground-breaking separation surgery. The procedure was successfully executed, giving both boys a chance at a normal life previously thought outside the realm of possibility.
It no exaggeration to say that Bertram’s achievement opened a new door to the treatment of this debilitating condition, prompting numerous medical experts around the world to put their minds to the issue. Almost a century down the line, it’s evident that significant progress has been made in this field.
Ladan and Laleh Biljani
Despite being some of the most famous names within the umbrella of this particular birth defect, the lives of the Iranian conjoined twins tragically ended on the operating table. Instead, they’re a testament to just how difficult such procedures are to perform, and most definitely an inspiration to the doctors who came along in the years that followed, pushing themselves to the limit of human capability so as to avoid another pair of children suffering their fate.
Born with an extraordinary condition that saw them conjoined at the head – craniopagus – Ladan and Laleh Bijani became international figures, showcasing both the wonders of medical advancements and the inherent risks involved. Their desire for independence and the pursuit of individual lives led them to Raffles Hospital in Singapore, where renowned surgeons from around the world attempted to separate them.
Against the advice of the lead surgeon in 2003, the inseparable sisters underwent a grueling and indescribably complex 52-hour operation. The procedure sought to sever their shared blood supply to the brains – something never achieved before in the history of medicine. The world watched with bated breath, holding on to the hope that medical science had advanced just far enough to allow a miracle.
What perhaps exacerbates the tragedy to its utmost is the fact that the surgery almost succeeded, as the blood supply had been nearly entirely separated by the time Laleh Biljani’s heart stopped beating due to severe blood loss. Even with massive stocks of appropriate-type blood, the doctors just couldn’t supply enough to keep her alive. Ladan passed away shortly after her sister.
Bernardo and Arthur Lima
The seven surgeries performed on two three-year-olds from Brazil in 2022 are perhaps the greatest proof that Ladan and Laleh’s sacrifice changed the world for the better. The case of Bernardo and Arthur Lima was perhaps an even harder challenge for medical experts, as, unlike the Iranian twins, their brains were deeply fused within the conjoined skulls.
It doesn’t suffice to say that such a medical procedure is pretty much sci-fi, but it was still undertaken after careful deliberation of various experts. Doctors from Rio de Janeiro thought that perhaps something could be done for the boys, and they contacted one of the world’s leading children’s health facilities, the Great Ormond Street Hospital in London, England.
They brought the boys in and acted with strict adherence to every word of Ormond’s pediatric surgeon Noor ul Owase Jeelani, who guided his colleagues in one of the most fascinating medical achievements to date.
It wasn’t all going to be done in one attempt, however, and the boys had to be operated on seven different times, with the final two lasting a total of 33 hours and involving nearly 100 medical staff. The procedure was also guided by Dr Gabriel Mufarrej, who headed the hospital where it took place.
In order to even prepare for this practically unattainable achievement, the two experts consulted with one another for months leading up to the surgery, exploring various ideas in extremely accurate virtual reality models.
It wasn’t just the doctors who made this possible though, as the entire operation was funded by Gemini Untwined, the world’s leading charity organization focused on the research and treatment of twins conjoined at the cranium.
The unprecedented success in Rio de Janeiro has now paved the way for many similar procedures, as the invaluable information of how something so complex had been successfully achieved for the first time in human history is widely available to all future doctors. The coming decades look brighter than ever for conjoined twins, and the world has their admirable resilience and the medical experts’ unwavering dedication to thank for that.