Two times the courage - Macleans.ca
 

Two times the courage

Canada’s conjoined twins continue to fascinate and inspire


 

With five children age six and under, Felicia Simms has little time for reading or reflection. She takes each day as it comes and does her best to put it to bed with her children, knowing, as the mother of Krista and Tatiana, Canada’s most famous twins, that the morning will have a fresh agenda of challenge, worry and reward. So, it took time to read Lori Lansens’ bestselling novel, The Girls, about a set of twins just like hers—craniopagus twins, joined at the head. Each night as Simms, 23, rocked her twins to bed, she’d read: a chapter, or a few pages, or until her tears made words swim on the page.

Lansens’ novel was published a year before Krista and Tatiana were born. The parallels are eerie. The novel is a joint narrative, the separate recollections of the fictional Rose and Ruby Darlen, “known to the world medical community as the oldest surviving craniopagus twins.” Lansens, born and raised in Chatham, Ont., set her novel in small-town Ontario. Simms and her partner, Brendan Hogan, raise their children in the small city of Vernon, in B.C.’s Okanagan Valley.

Simms was hooked from the opening paragraph of The Girls. How could she not be? It begins in Rose’s voice: “I have never looked into my sister’s eyes. I have never bathed alone. I have never stood in the grass at night and raised my arms to a beguiling moon. I’ve never used an airplane bathroom. Or worn a hat. Or been kissed like that. I’ve never driven a car.” The fictional twins are 29 years old as they reminisce. Krista and Tatiana—Canada’s only conjoined twins, real flesh and blood with sparkling eyes, and a growing sense of their abilities, if not their limitations—turn two Oct. 25. Their very public lives have been an open book, with only the opening chapters yet written. The poignant story of Rose and Ruby is a work of the imagination—one of an infinite number of possible outcomes for two girls yoked together for life. Still, says Simms, “I relate to it so much.”

The twins’ second birthday will be celebrated in the gymnasium of the Pleasant Valley Christian Academy in Vernon. Although money is perpetually in short supply, the family has issued an open invitation to the town. “People want to see how they’re doing,” says Hogan, their father. The twins are treated with a mixture of curiosity and awe, and, in some quarters, with revulsion and disapproval. No one is sure what to expect: will there be 40 people or 200, wonders Louise McKay, Simms’s mom, chief party planner, and family matriarch. Gradually, though, the twins have become less an attraction, more a part of town life. “We can actually go out and get our shopping done,” says Simms, “and it doesn’t take us an hour to get through the store.”

Certainly the twins don’t lack for attention at home. The roost, a sprawling rental house overlooking Vernon’s olive-green hills, is ruled by Louise and hubby Doug McKay, the family philosopher and chauffeur. There are the twins’ older siblings, Rosa, 6, and Christopher, 4, and their sister, six-month-old Shaylee, Simms’s and Hogan’s latest, and final, addition to their family, they say. Two of Simms’s younger siblings live at home and Hogan, 24, her partner, is a constant visitor although he lives with his parents. On top of this, Louise raises the three children, ages six to 11, of her eldest son. In all there is a revolving cast of 13 at the moment—a family bound together in so many ways.

After a series of health scares, the twins have made steady progress in recent months, though the process of crawling, let alone walking, eludes them. They motor around on their backs, or sides, pushing out with their legs and arms. The Sunny Hill Health Centre for Children in Vancouver recently built them a platform that allows them to stand upright, their bodies splayed apart like an inverted V. Their vocabularies are slowly expanding, though they’re limited to the names of family members, as well as the universal “no” all children master in the womb. They weigh a combined 36 lb. Tatiana, “the engine,” as her mother calls her, is the smaller of the two. Her heart and kidneys do most of the work, and maintaining her weight is a struggle.

The two are an intriguing mix of similarities and differences. Their brains share a significant bridge of tissue and a tangle of blood vessels. An attempt at separation, except in the most dire of circumstances, is unthinkable. The very notion weighs heavy on their mother. She describes a story in The Girls about another set of twins, conjoined at the chest. They share a heart, and, when it begins to fail before their second birthday, their anguished mother lets surgeons sacrifice the weaker girl to give the other a chance at life. The surgery seems a success, but when the girl comes out of the anaesthetic and realizes her sister has been amputated, she closes her eyes and dies, too. As Simms recounts the tale, having just put her twins to bed, she dissolves into tears.

Krista’s and Tatiana’s connection has unexplored depths far beyond the physical link of bone and blood and tissue. Since they face in different directions, one girl will often seem to do the looking for both, says Simms. “Or you tickle one and the other one will completely laugh,” she adds. “It’s awesome, and yet so weird at the same time.”

This summer, Krista went into convulsions for six terrifying hours. A battery of tests revealed nothing abnormal, and doctors remain mystified. They’re not even sure which child was actually sick. Tatiana threw up as Krista’s convulsions started. Later, however, Tatiana played while her sister’s seizures continued. “Their brains are so intertwined,” says Louise, “it could have come from Tati’s side and Krista got the effects of it.” Krista seems to learn more quickly, even more so, her mother believes, since the seizures. Tatiana is the more vocal. Krista is demanding. Tatiana is more laid back. They fight when tired, sometimes biting or scratching. Fortunately, from a logistical point of view, they are united in their love of The Big Comfy Couch, a children’s television show.

Ask Simms if the girls realize they are different from other children and she pauses. “I don’t think so,” she says, though she knows that day is coming. “At this point, they’re just little girls trying to live like little girls.” Sometimes, she concedes, as Rosa and Christopher tear about the house, “they’ll kind of look at you: ‘Why can’t I do that?’ ” Still, the houseful of older children is good at including them in their play. “We want them to feel as normal as possible,” Simms says, “because they are normal in every sense of the word, except that they’re stuck to somebody else.”

Not everyone agrees. Doctors, ethicists and the public have all weighed in. Among the most critical is Canadian physician Dr. Ken Walker, who writes under the pen name Dr. Gifford-Jones. Last year, in the Canadian Medical Association Journal, he said Simms made a “monumental error” in not aborting the twins. He said the birth was “a cruel experiment and will cost taxpayers millions of dollars in medical and social costs.” Opinions were divided in subsequent letters to the journal. One called Walker’s opinions “refreshing.” Others were outraged. Should doctors have forced an abortion, asked a doctor from Germany. Is cost the determinant for treatment? “Who is qualified to ascertain the quality of their life?” he asked. Simms, curled up on the couch, cocooned with her clan, has no interest in unsolicited second opinions. “I believe in what I believe in,” she says flatly. “Everybody else can just kiss my butt.”

The opening sentences of The Girls continues with Rose’s what-ifs and never-weres: “Never a private talk. Or solo walk. I’ve never climbed a tree or faded into a crowd.” This, too, is Krista’s and Tatiana’s fate, God willing, their mother knows. It is not in Simms’s power to change such
limitations. It is not clear she defines them as such. The differences are what they are, she says, and what they were meant to be.

All she can offer her girls is the greatest gift she has, and hope one day Krista and Tatiana can look back and know that it is enough. “So many things I’ve never done,” says Rose, in Lori Lansens’ wonderful, make-believe book, “but oh, how I’ve been loved.”


 

Two times the courage

  1. What a darling Mommy Simms is. I agree with her 200%. I believe only God has the right to say who lives and who does not. !!

  2. What a darling Mommy Simms is. I agree with her 200%. I believe only God has the right to say who lives and who does not. !!