JANE ARMSTRONG
VERNON, B.C. — From Friday's Globe and Mail Published on Friday, Apr. 27, 2007 8:13AM EDT Last updated on Tuesday, Mar. 31, 2009 10:44PM EDT
There is a passage in a novel about two adult conjoined twins that describes the pain and wrenching loss felt by twins divided by a scalpel.
In Lori Lansens's book, The Girls, Minnie and Marie of Wales were born conjoined at the chest and they shared one heart, which began to deteriorate just before their second birthday. Doctors decided to sacrifice the smaller sister, Marie, to save Minnie. She would receive the girls' shared heart.
When Minnie woke up from surgery, her heart was working fine. But when she saw that her sister was no longer there, she closed her eyes and died, too.
Felicia Simms, a real-life mother of conjoined baby girls, cried when she read the passage.
"It was so sad," Ms. Simms said, placing her hand over her heart.
The prospect of losing one or both of her girls through surgery haunts Ms. Simms, a 21-year-old from Vernon, B.C. Ever since she gave birth to the twins six months ago, the question has loomed like a mighty weight. It's all anyone wants to talk about when they first meet her: Can Tatiana and Krista be separated? Others are less diplomatic: Can they ever be cured?
Ms. Simms replies truthfully that doctors still don't know. Soon they will.
Yesterday, doctors at B.C. Children's Hospital in Vancouver performed a cerebral angiography, in which blue dye was injected into the twins' veins, illuminating the vast network of blood vessels the girls share beneath their skulls. This test will reveal whether separation surgery is possible.
Doctors are particularly interested in a bridge of tissue that connects the girls' brain stems. If it's discovered that life-sustaining brain signals travel this route, separation might be ruled out. But if this bridge is just tissue, surgeons could attempt to separate them.
Ms. Simms will then face the decision of her life. Despite all the help she feels she receives from her parents, her siblings and her partner, Brendan Hogan, everyone understands that this decision is hers alone.
It's made even more daunting because she has options. Surgery would be elective, not life-saving.
Unlike some conjoined twins, neither girl is in imminent danger of dying without surgery.
Ms. Simms's stepfather, Doug McKay, compares the decision to parachuting.
"You can stand there or jump out of the airplane. There's no halfway in between."
Ms. Simms's mother, Louise McKay, said that her daughter's biggest fear -- and one that Ms. Simms won't discuss -- is that Tatiana, the weaker twin, won't make it through a lengthy operation.
"It's scary," Ms. McKay said. "When you look at them, you just know it's going to be Tatiana who isn't going to make it."
Ms. Simms's stepfather nods. "I just look at either of them and know there ain't no way I could lose either." Of his stepdaughter, he said, "I don't envy her."
Conjoined adults
One reason conjoined twins are so fascinating is that they're so rare: It's believed there are only about a dozen adult pairs in the world.
The sight of two distinct humans sharing one body challenges our notions of independence and selfhood. And it's for this reason, perhaps, that they instill fear and discomfort.
How can two people ever hope to live fulfilling lives if they are joined? How can they marry, have sex, hold separate jobs? What happens if one wants to go for a walk and the other wants to watch television?
Before modern medicine allowed twins to be physically separated, conjoined twins had no choice but to learn to live with another person.
Chang and Eng Bunker, from the former Asian country of Siam (now Thailand), were among the first conjoined twins to financially profit from their condition.
They came to the United States as teenagers in 1829, when an American businessman paid their mother a stipend to feature the boys -- who were joined at the chest by a 15-centimetre band of flesh -- in exhibitions. Later they appeared in P.T. Barnum's travelling circus.
The Bunkers enjoyed the travel and, by all accounts, didn't mind life as circus attractions. By their mid-30s, they had bought a farm in North Carolina.
They married two sisters and fathered 21 children between them.
At first they lived on one farm, but as their families grew, they bought a second home, one for each household. Chang and Eng alternated between houses. They died at age 62 within a few hours of one another. They never expressed a wish to be apart.
At 45, Lori and Reba Schappell of Reading, Pa., are the oldest living conjoined twins in America. They are joined at the head, just above the eye.
Reba is a country singer and Lori once designed equipment for the disabled. The two have been featured in two documentaries and have done some acting.
They bicker and get on one another's nerves, like many sisters, but say they can't imagine a life apart.
"Don't assume [our life] is difficult until we tell you it is," Lori Schappell has said.
By the mid- to late-20th century, with advances in surgical techniques, separation became viable for many kinds of conjoined twins. For parents, it became a desired option. Always, these operations were depicted as medical triumphs.
In Canada, two of the most celebrated conjoined twins were Lin and Win Htut from Myanmar. The boys, who were joined at the pelvis, had two legs and a shared set of sexual organs. The surgery was performed at Toronto's Hospital for Sick Children in 1984. Lin, the more "aggressive" of the two, received the penis. Win underwent sex-reassignment surgery to become a girl.
In the book One of Us, Conjoined Twins and the Future of Normal, medical historian Alice Domurat Dreger quotes a Sick Kids nurse saying she wasn't sure whether the surgery was ethical: "The healthy 'whole' children who we had adopted as our own were now, 17 hours later, separate but badly deformed. Now they seemed handicapped."
Today, the adult twins live with their mother in a house in a small town north of Rangoon, and work as silversmiths. Win rejected the notion of being a girl and has lived as a male since the age of 10. They told a Globe and Mail interviewer in 2005 that they were grateful to the Canadian hospital for doing the surgery.
Ms. Dreger's book argues that conjoined twins, like other people with dramatic physical anomalies, are viewed as deformed and therefore sick.
She compares conjoined twins to people born with unusual or ambiguous sexual anatomies. For years, parents of these children were urged to have them "fixed" through surgery that would make them a normal boy or girl.
The author contends that separating conjoined twins can leave one or both of them with reduced mobility and painful scars. In craniopagus cases, the mortality rate for twins who undergo surgery is 57 per cent.
In an interview, Ms. Dreger said "the tendency is to think that separation is always the best option. It's also a charitable instinct," she added, "the notion that we should try to give every child the optimal life possible, and there is the assumption that separation will do that. I think it turns out not to be true."
Ethical dilemmasAs separations became more common, doctors began to confront new moral issues.
In cases where conjoined twins shared a heart, for example, their life expectancies were always very short. But surgery allowed doctors to "sacrifice" one twin to save the other. Critics said these operations amounted to euthanasia.
The 1993 case of Angela and Amy Lakeburg of Indiana mirrored the fictional story of Minnie and Marie of Wales. The girls were born with fused livers and one shared heart. Within hours of their birth, they went into heart failure and were put on a ventilator. They weren't expected to live.
Sacrifice surgery was broached, but the hospital's ethics committee rejected it, arguing that the girls' faulty heart wouldn't last even if it were just supporting one girl.
The parents, however, insisted on surgery. It was decided that Amy, the weaker one, would die and Angela would get the heart. Angela lived another 10 months before she died of pneumonia shortly before her first birthday.
But there have been amazing success stories as well. In 1997, U.S. neurosurgeon Ben Carson performed the first successful separation surgery on craniopagus twins Luka and Joseph Banda of Zambia. The 11-month-olds were joined at the head and faced opposite directions. Both survived, with few neurological problems.
Not all craniopagus cases turn out so well.
In 2001, doctors in Singapore separated 11-month-old Nepalese twin girls Ganga and Jamuna Shrestha in a 97-hour operation. After surgery, Ganga's brain became infected and she went into a coma.
Today, she cannot walk or talk. Jamuna can speak but cannot walk because her right limbs are weak. Follow-up surgery on the girls' skulls was never performed after they returned to their home village in Nepal.
In 2005, a surgeon told a Singapore news agency that separating the girls was a mistake, and both face a lifetime of disabilities in a country that can't afford to treat them.
Looming choice
Tatiana and Krista Hogan-Simms's Vancouver doctors are aware of the bleak odds in separating twins joined at the head. For that reason, the twins' neurosurgeon, Doug Cochrane, says he does not want to push Ms. Simms into a decision.
"If these children shared skin or shared bone only, then I don't think there would be any discussion about this," he said. "They would have been separated . . . and they would be home and it would be one of those stories with a wonderful outcome.
"But I think when they have as much in common as they do and things they may be mutually dependent on, they won't come away from this as well as they appear to be right now."
Ms. Simms says she is in no rush to learn the results of the girls' angiography. If surgery does become an option, the operation won't be done in Canada. The best surgical results for craniopagus twins have occurred in the United States.
Ms. Simms rarely speaks of the girls as separated individuals.
But one day at her mother's house, she was playing with them in her arms. They were straining their necks, trying to push the other out of the way to get a better view of Mom. Ms. Simms was egging on Krista, who, while bigger, is more passive than Tatiana.
"Boy, when you're separated, you're going to love looking around," she said, laughing. "Your heads will be spinning."
That day might never come. But the decision is still far enough away that she can enjoy this afternoon with her girls, just the way they are.
Other conjoined twins
Brittany and Abigail Hensel
The 17-year-olds from Minnesota are joined at the torso. They have two hearts, two spines, four lungs, two arms and two stomachs. Below the waist, they are more like one body: one intestine, bladder and set of reproductive organs. They have learned to walk on two legs, even though Brittany, the left twin, can't feel the right side of her body, and vice versa. The girls run, play sports and drive: Both steer and Abigail controls the accelerator with her right foot.
Rosie and Gracie Attard
Their parents travelled from the Maltese island of Gozo to England to give birth to the girls in 2000. The twins were joined at the lower abdomen. They each had their own heart, lungs, kidneys and liver, and they shared a bladder. Gracie had normal brain development and her organs worked well. Rosie had heart and lung problems and depended on Gracie for oxygen and blood. Doctors said Rosie was sapping Gracie's strength, which would lead to the death of both girls. They proposed surgery to save Gracie and sacrifice Rosie.
The parents, who are Catholic, would not agree and the case went to court in England. But the court ruled in favour of the doctors and the surgery took place in November, 2000. Rosie died. Gracie, now 6, recovered.
Clarence and Carl Aguirre
They were born in April, 2002, in the Philippines, joined at the top of their head. They were separated in operations performed in the United States over 10 months. The boys are recovering in a house in Scarsdale, N.Y., and go to physical therapy and preschool. Now nearly 5, they are both behind developmentally and will need more surgery. But their surgeon said the operation saved their lives -- they couldn't eat properly and suffered chronic lung infections.
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