A piece of their mind

The odds of their conception were astronomical; of surviving in the womb, let alone a live birth, slim to none. The odds of living past their first day, worse than a coin toss, though not if the small army deployed by Vancouver’s Children’s Hospital had a say in it. And they did. And today, approaching their fourth birthdays on Oct. 25, Tatiana and Krista Hogan are wearing pretty velvet dresses, red and purple respectively. They greet you at the door of their sprawling, unruly home in Vernon, B.C., carrying a bouncy ball, and issuing a command: come play.

You have just enough time to add your shoes to the pile at the entrance and to give their mother, Felicia Simms, a quick greeting before you’re led through the living room and kitchen, to a long, sloping hallway that leads to some of the bedrooms in what was, until this year, a residential home for the elderly. They plant themselves at the bottom. You’re at the top, with their 2½-year-old sister, Shaylee, rolling and fielding their returns. Then the twins want the higher ground, but you’re doing it wrong. “No,” says Tatiana as though dealing with a mental defective. “Bounce it!”

They are the rarest of the rarest of the rare. Tatiana and Krista are not just conjoined, but they are craniopagus, sharing a skull and also a bridge between each girl’s thalamus, a part of the brain that processes and relays sensory information to other parts of the brain. Or perhaps in this case, to both brains. There is evidence that they can see through each other’s eyes and perhaps share each other’s unspoken thoughts. And if that proves true, it will be the rarest thing of all. They will be unique in the world.

They have been drawing international attention, both public and scientific, since before their birth. Dr. Douglas Cochrane, a neurosurgeon at Children’s Hospital, is part of the team that has been watching over them since they were in the womb. Last year he conducted tests in which one twin looked at an object while he measured the brain activity in the other. “Their brains are recording signals from the other twin’s visual field,” he cautiously concluded. “One might be seeing what the other one is seeing.”

The test and his comments were included in the documentary Twins Who Share a Brain, produced and directed by Kelowna filmmakers David McIlvride and Alison Love. It aired in the U.K. in May, and on CBC’s Doc Zone earlier this month. The couple spent a year tracking the family for their sympathetic and moving portrait. They grew close to the twins and their whole chaotic clan. “People who have sick children, the couples often split up and the families become divided. That’s the absolute reverse of what’s happened in this family,” Love says in an interview. “They’ve all huddled together to surround these twins and take care of them and do the best that they can for them, in their way.”

The documentary created a minor sensation when it aired in the U.K., drawing 2.5 million viewers, almost 10 per cent of the viewing public. Among the more bizarre responses it engendered was a debate on the British student chat site The Student Room; the topic: “Conjoined twins sharing a brain—one person or two?”

The debate was of the angels-dancing-on-a-pin variety, as though science nerds had stumbled into a philosophy class. “I think it depends on whether they can develop their own personality,” opined one. “But then does that mean they are just one person with a very weird split personality disorder?” Added another: “If one is capable of thought that the other can’t interpret or won’t know about, then I’d say it’s two people. Otherwise I’d say it’s just one person with two functioning bodies.”

It’s safe to say no one in the twins’ family has any such doubts. The girls were distinct from the get-go, and they grow more so as they age. Krista is the larger and stronger. Tatiana, while smaller, is the work horse. Her heart does much of the pumping, her kidneys and liver do most of the filtering. “Krista is my bully. I think she always will be,” says Simms. “But [lately] Tati has taken a lot of the authority,” she adds. “ ‘If you’re going to be mean to me, I’m going to stop being nice.’ [Tati] is not as laid back as she was before. It’s a good thing.”

The twins receive weekly physiotherapy, most recently to improve their upper arm movement. Although some doubted they would ever walk, their mobility continues to improve. They walk and even run a bit, albeit awkwardly. They spin with remarkable ease, and they flop and wrestle on the floor with their siblings in a joyous tangle of limbs. Although they lean into each other like an inverted V, their necks so far have not suffered from the strain. Picking them up, one worries they’ll break. And yet they are remarkably flexible. “Their necks don’t seem to bother them,” says their mother, “When you see them stand up and stuff, you see all the muscle in their necks. It’s amazing.”

It has been a challenging year for the family, a blended, multi-generational clan of parents, siblings, cousins, uncles and aunts. They number 13 or 14 in their rented home, depending on the day, as well as three cats and a burly seven-month-old bull mastiff named Zeus.

Brendan Hogan, Simms’s partner and the father of their five children, is just back from the hospital, wan and subdued, as he copes with a preliminary diagnosis of Crohn’s disease. “I’ve got yards of intestines anyway,” he says with a resigned rumble. “I can lose a few chunks.” Simms heaves a sigh. “I’m completely stressed out,” she says. Later, though, she reveals Hogan has proposed marriage, after some 11 years together. She’s keeping Sept. 3 open, the anniversary of their first date.

At the kitchen table, Louise McKay, Simms’s mom and the clan matriarch, is ironing transfers on white dress shirts, adding the logo for the family’s new business, TK Delivery. (The T and the K are joined at the top.) “Our son Dougie came up with the idea. He wanted to help us out financially because of all the trips going back and forth [to doctors] in Vancouver,” says Louise, who does much of the dispatching. Her husband, Doug, drums up business. “We deliver food, flowers, whatever anybody needs,” she says. “We charge $5 for delivery in town.”

Money is tight. Each time they get ahead, there’s a financially draining trip to Vancouver. They get help from provincial social services and the At Home Program, which pays extraordinary expenses for parents caring for severely disabled children, providing such things as diapers and an infant formula the girls take to maintain Tatiana’s weight. They’re thinking of taking the risk of opening their lives to a reality TV show, though there are currently no offers. “Me and Doug, we’re not young puppies anymore,” says Louise. “It would be nice to have a nest egg so they can go to college or do what they need to do.” It would help all the kids, adds Hogan. “That way they’re all set.”

The twins were in Vancouver again last week for a round of doctors visits, a CT scan and an ultrasound. The news was all good, says Louise, and to the family’s relief they were able to return to Vernon in time to celebrate the girls’ birthday at home. About 35 friends and relatives gathered at the family home Sunday to mark their fourth birthday. The twins bobbed for apples and played a Nintendo Wii dance game. They received Princess dolls and sets of Play-Doh. They shared a vanilla cake baked by Hogan’s mother.

A pair of active, conjoined four-year-olds is not something your typical child-rearing text addresses, so the parents have had to wing it when it comes to issues like toilet training and discipline.

The girls still use diapers. The problem is Tatiana’s kidneys do most of the work. “Tatiana pees more than Krista, that’s the challenge we’re having right now,” says their mother. “Tatiana will go on the potty. Krista doesn’t pee a lot so it’s hard to train one when the other one doesn’t want to.”

Discipline has proved “the hugest puzzle piece,” says their mother. Like typical children there are constant scraps over toys and territory, particular with their little sister, Shaylee. A twin may be the instigator, but singling out one for punishment often doesn’t work. “When one gets in trouble and you try to discipline her, the other one kicks in and starts defending her sister,” says Simms. “I’ve just gotten to the point where if they don’t change their attitude when you talk to them the first time they both go into time out. How do you not?” she asks. “It’s just come down to . . . you can’t discipline one without disciplining the other. It’s just impossible.”

Adding to the conundrum, of course, are their linked brains, and the mysterious hints of what passes between them. The family regularly sees evidence of it. The way their heads are joined, they have markedly different fields of view. One child will look at a toy or a cup. The other can reach across and grab it, even though her own eyes couldn’t possibly see its location. “They share thoughts, too,” says Louise. “Nobody will be saying anything,” adds Simms, “and Tati will just pipe up and say, ‘Stop that!’ And she’ll smack her sister.” While their verbal development is delayed, it continues to get better. Their sentences are two or three words at most so far, and their enunciation is at first difficult to understand. Both the family, and researchers, anxiously await the children’s explanation for what they are experiencing.

Imagine, too, the potential jealousies and complications as they age, if each can invade the other’s privacy at will. For the documentary, Love and McIlvride arranged a meeting for the twins and their family with Lori and George Schappelle, now 49 and believed to be the oldest living female craniopagus twins. While the women are fused at the skull (without the profound linkage of their brains that Krista and Tatiana have) they live independently in an apartment in Reading, Pa. It’s heartening news for Simms. But she and her mother admit they couldn’t resist asking the Schappelles about their love lives. “I have had dates. I have almost been married,” Lori replied. “It’s all compromise. Compromise is your big word.” Well, Louise says today, such questions do prey on the mind. “They’re going to go to the prom, and they’re going to meet boys,” she says. “How are they going to have privacy?”

Of course, nothing is assured. The state of their health can turn on a dime. Every day they defy the odds. So many odds. How many mothers would have done what Felicia Simms did, not terminating the pregnancy, knowing what she knew? How many families would have banded together, and stayed together, and grown stronger in a bond almost as fierce as that of the twins—ignoring, or at least absorbing, the financial hardships, judgmental stares and whispered disapprovals?
Their mother has come to accept each day with them as a gift and a little miracle; its purpose still unfolding. “They’re here for a reason,” she says, as you lace up your shoes and prepare to leave. “We just don’t know the reason yet.”
“Hug!” demands Krista. And you sweep them up, feeling their warm embrace and two beating hearts. And you wonder about that reason all the long way home.