Reflections on Conjoined Twins

Conjoined twins—the rare identical twins who fail to separate completely--represent a form of human life that should be respected. There are many variations on typical human development of which we are aware, and we accept them. Somehow, the idea of conjoined twins seems to repel many people. Perhaps that is because our cherished beliefs in individuality and identity are challenged by conjoined twins. I recall a 1997 Broadway production of Side Show, a musical production about the life of conjoined twins, Daisy and Violet Hilton, who were vaudeville stars in the 1930s. To me the play was insightful and informative, but it closed quickly because it could not attract audiences.

In fact, conjoined twins often show different interests and talents, and find ways to live their life pursuing them. Perhaps the best known pair, Chang and Eng Bunker, born in 1811, married sisters and took turns living in each other’s homes for several days at a time. Between them, they fathered over twenty children, leaving many descendants.

One twin drank heavily, while the other twin abstained. Lori and Reba (a pair who recently passed away; see below), also showed differences. Lori identified as a female, while Reba identified as a male. Both twins attended high school and college. Like Chang and Eng, the twins maintained separate homes since they were twenty-four years of age. Lori was engaged and planned to marry—when she dated, her twin brought along books to occupy her time. Of course, they had to navigate through life together, learning cooperation and patience.

There is an expression that many people use when referring to two people who are closely connected socially. They say that the couple are “joined at the hip.” We do not know for certain where this expression originated. Some people may use it disparagingly, implying that too much closeness can be suffocating. However, for others it may convey envy for the closeness and acceptance we all seek.

There is a poignant comment by a nurse who reacted to the surgical separation of young twin boys, Lin and Wun Hut, from Burma. “Once we overcame our initial reaction to their deformity we were struck by their normalcy.” However, following separation the twins appeared “badly deformed,” even “handicapped.” As I wrote in my book, Entwined Lives, “These nurses had discovered the twins’ humanity.”

Craniopagus Twins and the Physicians Who Work With Them

Conjoined twins occur in about one in 200 identical twin births. They appear in a variety of forms, the most common type being thoracopagus (75% of cases; shared sternum diaphragm and abdominal wall). Here I will discuss the rarest form known as craniopagus (2% of cases; fused skull).

In October-November of 2023, I visited Brazil as a consultant to the Brazilian Twin Panel at the University of Sao Paulo. I also had opportunities to visit three other cities, one being Rio de Janeiro where two recent surgical separations of conjoined twins had taken place. Some of these operations have made headline news. I wished to meet with one of the surgeons to better understand the nature and progress of these undertakings.

With the help of a colleague, Dr. Alexandre Ghelman (physician and identical twin), I was able to arrange a morning meeting with Dr. Gabriel Mufarrej. Dr. Mufarrej was one of the two surgeons who had successfully separated Brazilian craniopagus male twins, Arturo and Bernardo Lima. This case is a landmark event in medical twin surgery because the twins were separated at four years of age--later than any other craniopagus twin pair. Recall that craniopagus twins are a rare form of conjoined twins who are connected at the head.

Dr. Ghelman and I met with Dr. Mufarrej on the morning of October 27, 2023. He told us a great deal about the Lima twins who, at nearly age seven years, were progressing very well. The operation was completed in conjunction with Dr. Noor ul Owase Jeelani, of London, who had been invited by Dr. Mufarrej to take part. Dr Jeelani is famous for his successful separations of conjoined twins and is also a founder of London’s Gemini Untwined in 2011.

Understanding Twins Essential Reads

The Unique Development of Twin Language

How Parental Indifference Affects the Twin Bond

The mission of Gemini Untwined is “providing hope and treatment for cranially conjoined twins globally through pioneering research and treatment” (Gemini Untwined, 2023). The operation, which took place at the Instituto Estadual do Cérebro Paulo Niemeyer, in Rio de Janeiro, was the first step in the beginning of Gemini Untwined’s global partnership.

The twins were diagnosed as conjoined by ultrasound at the twelfth week of the pregnancy; however, greater detail was evident from an MRI scan (magnetic resonance imaging) at week twenty-three. The case was extremely complex, presenting many challenges to the surgeons. Nevertheless, they agreed to perform the operation because they were encouraged by the twins’ parents and because Mufarrej believed that the surgery could prove successful. Four separate surgeries had been planned, but the physicians eventually performed seven. The expenses were covered by the Brazilian health system known as Sistema Único de Saúde (SUS).

The relationship between Drs. Mufarrej and Jellani was extraordinary. Mufarrej referred to his surgical colleague as a “soul brother.” The medical staff also remarked on the amazing rapport that developed between these two surgeons. However, as the operation progressed, they did not always agree as to what the next step should be. At one point they went on a brief break, had some coffee, and examined the 3-dimensional models of the brain another time and determined the answer. The twins set a record—they became the oldest craniopagus twins to have been operated on and to have survived.

Dr. Ghelman is on the right, Dr. Mufarrej is on the right, and I am in the center.

Source: Nancy L. Segal

Dr. Mufarrej offered keen insights into what it was like to perform this operation. He recalled that when the twins were finally separated, he felt it was a great personal “win” because some colleagues did not believe it could be done. He said it was “fantastic . . . I started to cry. I could feel the presence of God, it was very spiritual.” In fact, Mufarrej had separated a second set of craniopagus twins two months before my visit. He described that procedure as an easier operation because of the structure of the twins’ anatomy, but his emotions were the same. A photograph of Drs. Mufarrej and Ghelmen, and me is displayed here.

Passing of Oldest Conjoined Twins

Lori and Dori (Reba/George) Shappell were born on September 18, 1961 to a West Reading couple, Franklin and Ruth Shappell (Sandomir, 2024). The twins are survived by their father and six siblings; their mother passed away in 2019. The twins, who were craniopagus, had been given little chance of surviving. However, they became the second oldest conjoined twins to survive, as indicated in Guinness World Records. Their passing on April 7, 2024, at age sixty-two years, was acknowledged in the media, but their cause of death was not indicated.

I spoke with the twins for a chapter in my first book, Entwined Lives: Twins and What They Tell Us About Human Behavior (Segal, 2000). They related an extraordinary story: They had once visited a liquor store to buy a gift for a friend. The shopkeeper asked Reba for proof of age--but he agreed to sell the bottle to Lori if she made the purchase. Lori was the much larger twin, whereas Reba was positioned on a high stool with wheels.

In summary, medical technology is becoming increasingly advanced, enabling more conjoined twins to be detected, to survive, and to be separated. Of course, not all conjoined twins can withstand surgical procedures, but they may survive if they stay connected. As I indicated above, conjoined twins represent a form of human life that should be respected, as are other variations on typical human developmental processes.

Additional information about conjoined twins can be found in longer versions of this article, one published and one forthcoming, in the journal Twin Research and Human Genetics.