MEDIA

A TINFOIL SUIT IN A LIGHTNING STORM

JONATHON GATEHOUSE December 25 2006
MEDIA

A TINFOIL SUIT IN A LIGHTNING STORM

JONATHON GATEHOUSE December 25 2006

HOME FOR CHRISTMAS

How, exactly, do you prepare for life with identical twins who are joined at the head?

SOCIETY

BY KEN MACQUEEN • Felicia Simms, the mother of Canada’s most famous baby twins, believes in the beauty and wonder of fairies. They comfort and amaze her, and they have since she was a little girl, not so very long ago. “Anything mystical,” she says. “Unicorns, dragons, anything.” But especially fairies, make of it what you will. She is just 21, and already a mother of four, and the reluctant focus of international attention. There are moments of sweet naïveté when you speak with her, across the table in her parents tiny stucco home in Vernon, B.C., but there are flashes of steel and moments of self-assured maturity. These two virtues she needs in abundance, these, and courage and the wisdom of Solomon.

Fier identical twins, Krista and Tatiana, born six weeks premature Oct. 25, are joined at the head, sharing some brain tissue, their bodies splayed apart, like two sides of an equilateral triangle. They were scheduled on Dec. 14 to be airlifted home to Vernon from their neonatal intensive care room at B.C. Women’s Hospital and Health Centre, where they are thriving. Meantime, an exhausted Simms made her first quick trip home to Vernon to prepare for their release. An artificial tree is assembled. The living room is a tangle of light strings and extension cords, as the family prepares for what Simms’s mother, Louise McKay, calls “our own Christmas miracle.” Two of Simms’s brothers cover for her in Vancouver, helping bottle-feed the girls. The twins are a family project. They’re alive because of the wonders of modern medicine, because their mother willed it to be so, and because, she believes, she was chosen.

It was Solomon, the Biblical king, who settled the dispute between two women over the parentage of a baby by offering to cut the child in two. Easy for him, it wasn’t his kid. Here, the well-being and the lives of one or both children hang in the balance. Felicia Simms is surrounded by a loving family. She has the support of Brendan Hogan, the father and her partner of almost seven years. She has the benefit of a remarkable medical team in Vancouver. One day, though, once the tests are complete and the prognosis delivered, it may come down to this: do you cut the babies apart? There will be a world full of opinions, but ultimately it will be a lonely decision. It will be Felicia’s choice.

“God keeps a family album—and your picture is in it. God loves you and has a plan for your life.” —The Seventh-day Adventist Church, What Adventists Believe.

Little in Simms’s young life prepared her for the financial, physical and ethical challenges presented by Krista and Tatiana. Of course, what would? Simms has always been quiet, introverted and easy-going, sometimes to a fault, says McKay. Like her 45-year-old mom, Simms is prone to panic attacks, where the stresses of everyday life sometimes rise up to overwhelm them. The panic disorder, in fact, has put McKay on a disability pension, though she laughs that after surviving the past few months it’s time to get back into the workforce. Simms was raised with five siblings in a blended family of modest means. For a time, Louise and her husband, Douglas, helped run a pizza parlour in Golden, B.C. Then they moved to the north Okanagan city of Vernon, where Simms spent her teen years. She met Hogan almost seven years ago, introduced by Simms’s cousin and Hogan’s best friend. They’ve mostly been together ever since, “through ups and downs,” says Simms. Adds Hogan, a construction worker with a deep, gravel-crushing laugh, “We want to get our ups and downs out of the way before we get married.” The two don’t live together, but that should change next year. Hogan is saving for a house.

Their relationship survived an unplanned pregnancy. “I was 16 when I had Rosa,” she says of their sweet-natured four-year old. “It was a surprise.” Christopher, a rambunctious bundle of energy, arrived two years later. Simms finished high school from home, as well as a college course in computer accounting. Then came her latest pregnancy. “I always wanted to be a mom,” she says. “But I also had dreams of becoming a hairstylist. I did have dreams.” Hogan—dressed in a fleece sweater and pants of his favourite colour, fluorescent orange—is flopped on the living room floor. Rosa is combing his flowing beard, using an elastic band to gather it into a tiny pigtail under his chin. “She still has dreams,” he rumbles, rising to give Simms a smile. “You’re not that old.”

The news came out of the blue this July. Twins, she was told after a routine ultrasound early in her pregnancy. Conjoined twins, “ft was very traumatic and something very unexpected,” she says. “After I calmed down a little bit and actually thought about it, and got the second opinion from doctors in Vancouver, I kind of just knew that everything would be okay.” Ending the pregnancy never entered into her thinking. She’s a member of the Seventh-day Adventist Church, an evangelical Christian denomination. It describes abortion as “one of the tragic dilemmas of human fallenness,” but it is less doctrinaire

than many on the issue. A church assembly in 1992 outlined the “exceptional circumstances” under which the decision on whether to terminate a pregnancy must rest with the woman. These include: “significant threats to the pregnant woman’s life, serious jeopardy to her health, severe congenital defects, carefully diagnosed in the fetus, and pregnancy resulting from rape or incest.”

Asked if she is religious, she gives a tiny shrug. “Kind of half-and-half,” she says. “I believe in God and I do go to church and everything, and I do pray sometimes. But I also have things beyond that that I believe in, too.” There is the fairy world, something she admits is at odds with church theology. For all that, she accepts the twins as part of a higher plan. “In my mind, He obviously thought I was the best choice to have them,” she says. Ask her why, and she smiles. “I don’t know. He just thought I was the right person.”

For two women with panic disorder, the next move was one of the most difficult: they made the decision to go public. “Twins present a challenge,” said a headline across the front page of the Vernon Morning Star, just two weeks after the diagnosis. Maybe others can benefit from the experience, says Simms, who remembers, long before her pregnancy, being amazed at stories on television about conjoined twins. “Also, we needed help,” she says, “and the only way we could get help was to get it out there and tell everybody what was going on.”

McKay, swallowing her own panic, is the chief spokesperson, gatekeeper and protector. “Nothing whatsoever prepared me for that,”

says McKay, a big woman with an easy laugh and an infinite store of patience. One day the phone started ringing and it hasn’t stopped since. “To protect my daughter and to make sure she gets through this okay, I’ve got to do what I’ve got to do,” she says. “It’s something that everybody is interested in, whether we like it or not.”

Since then there have been both moments of sweetness and of unthinking cruelty. Irene Alborough, a family friend and neighbour, helped establish a trust fund for the twins at the local Scotiabank. Simms, whom she’s known since she was a teen, “is one of those always meant to be a mother,” she says. Alborough helped distribute donation jars to local businesses, and she held a barbecue for the very-pregnant Simms this summer. “This woman comes up and the first words out of her mouth are, ‘Where’s the father in all this?’ I said the father is here in Vernon, he’s totally supporting her. She says, maybe she should just get rid of them and get fixed. I almost fell over,” Alborough says. “What gives anybody the right to judge her?”

One of the downsides of going public is a sense that Simms and the twins are community property, debating points rather than flesh and blood. “Most people are positive and curious,” says McKay. “But you’ve got the ones who are going to make comments that she’s costing us money, ‘We’re just paying for these freaks to be born,’ ” she says. There was an elderly woman who marched up to McKay. “She was so tiny and she looked so nice,” she recalls. “She says, ‘What’s she doing having more children? She’s only 21

years old, doesn’t she know how to close her legs?’ ” Simms says she is unmoved by negative responses to the birth, “ft actually bothers me a lot more than it does her,” says Hogan. “Yeah,” she says, “he gets right irate, and I just sit there, whatever. They can say whatever they want, it’s not their life.”

The Internet, of course, is ablaze with debate, most of it anonymous and much of it ugly. The Globe and Mail, in an online poll after the twins’ birth, asked: “Should fetuses entwined in such a manner be allowed to come to term?” Some 59 per cent of more than 11,000 voters said no. In response, an anonymous poster to a Christian website replied: “The 40 per cent who would have conjoined twins ought to be sterilized and have their kids put in foster homes so that they cannot infect future generations with their christaholic idiocy.”

Simms, through her intensely personal choice, has become an unwitting heroine of the anti-abortion/pro-life movement. The right-to-life society in nearby Kelowna donated $4,000 to the trust fund. The Vernon

chapter gave another $500. Paul Schratz, editor of the B.C. Catholic newspaper, urged support from other similar-minded groups and individuals. “What a powerful statement for life, for concern for a mother who is under intense pressure, and for the place of people with disabilities in society.” So far,

any such statement is muted. The trust fund, depleted by travel and other expenses, was a modest $2,487 last week. “I guess people just don’t understand the actual costs behind having this kind of a pregnancy,” says McKay, “and the special things the babies are going to need.” Among them, as the twins get older and heavier, may be in-home nursing care, something McKay worries won’t be funded by the province.

Itis with great joy that Felicia Simms and Brendan Hogan announce the birth of their twin daughters Krista and Tatiana. Big sister Rosa and big brother Chris are also thrilled to have two new sisters— Family Birth announcement.

Chris, dressed in a bright orange Tigger T-shirt, snuggles on his mother’s lap as a DVD whirs to life on a computer screen. “We’re going to watch the babies again,” she whispers. By any standard, it was not an intimate birth, as the video commissioned by the hospital shows. By Hogan’s count, there were 17 medical staff in the Vancouver operating room: two well-rehearsed teams really, with monitors and equipment for both girls. The hospital was full of security, Louise recalls. “That felt funny. Going from a nobody, basically, to having all these security guards around you. We looked out the windows at all the [broadcast] vans and satellite dishes that were up. It was a bit overwhelming.”

A blue curtain across Simms’s chest cut off her view of the team attending to her Caesarean delivery. There was a strange, painless sensation of being poked and prodded, thanks to an epidural. Hogan, dressed in hospital greens, stroked her forehead. “He’s the only one I know who can calm me down and keep me calm,” says Simms. Then, rising above the electronic beeps of the equipment, are two weak cries, so faint they could be mewling kittens. “They’re crying,” Simms remembers thinking. “Yes!”

The medical staff had prepared for the worst, since most conjoined twins are delivered stillborn, or die shortly after birth. Instead, the delivery has an air of well-rehearsed calm. The girls—with a robust combined weight of 12 lb., 11 oz.—are whisked to a cart where a medical pit crew wipes them down, checks their vitals, hooks them to monitors and wraps them in warm towels. The girls are raw and red; their cries grow more robust. Their hair is a dark, wet tangle. The eyes, the two closest to the point where their skulls are fused together, are swollen shut, a temporary condition. “Mommy’s babies,” says Christopher. Her angels, as Simms often calls them. Douglas McKay stands across the room, arms crossed, eyes fixed on the screen. “She beat a whole pile of odds, boy,” grandpa says. Craniopagus twins—that is, twins joined at the head— occur about once every 2.5 million pregnancies. “Of the 60 per cent that make birth,” he says, suddenly an authority on a subject almost beyond his imagining. “Seventy-five per cent of the survivors don’t make it for 24 hours.”

‘And maybe a tricycle, who knows? There’s lots of room for invention.’ —David Cooper, rehabilitation technologist, Sunny Hill Health Centre for Children, Vancouver.

There are practical matters great and small to be dealt with before the twins go home— and that is only the beginning of a daunting list of issues. The family has searched out a crib wide enough to accommodate the girls and low enough for them to be lifted in and out, a two-person operation. Meanwhile, staff at Vancouver’s Sunny Hill, a health centre specializing in treatment and services for children with complex disabilities, have invested dozens of hours designing a fitted foam car seat, more of a bed actually, that can be used to transport the twins. The seat can also be lifted out and placed into a stroller. The list goes on. David Cooper, a rehabilitation technologist at Sunny Hill, is already considering the challenges of designing a high chair for feeding the two when they’re older, a tub support to allow them to be bathed, and other childhood necessities.

The huge cost of the delivery, intensive care stay and battery of tests are picked up by the provincial health plan, as they would be in any complex, premature birth. The government has rented the family a van for what has been, from the first diagnosis, a constant shuttle to and from Vancouver. Some of the expense of specialized equipment and other special needs will be carried by B.C.’s At Home Program, designed to assist families with the extraordinary costs of caring at home for children with severe disabilities.

The fact the girls angle away from each other presents a considerable challenge as they grow older and more mobile, says Maureen Story, an occupational therapist at Sunny Hill. “For them to be able to sit on their own, they’re going to have to come closer together,” she says. Eventually they are likely to find ways to crawl and even walk together, she says. “Our bodies are such an interesting vessel.” To accommodate each other, both will have to bend their necks. “Like this,” she says, lowering her head toward a shoulder. “The muscles on one side are going to elongate and on the other side are going to shorten, and that’s a dilemma that, as a physical therapist, you look at,” she says. “If there is any hope of them being separated in the future then you want them to have normal muscles.” The hospital staff draw the girls closer together most mornings, says Simms, “so they can hold hands and play. They just want to make sure that they still know there’s somebody attached to them—there’s still somebody there.”

In many ways the most difficult hurdle for the surgical team and the family is the matter of informed consent and the appropriateness of undertaking a separation procedure.— Principles of Pediatric Surgery.

We are at the McKays’ dining table, under a print of the Last Supper, reading “Conjoined Twins Ethical Considerations,” from Dr. James O’Neill’s Principles of Pediatric Surgery. We run through the list: is separation possible with a “reasonable chance of success?”; what will be the quality of life “whether one or both survive?”; is it reasonable to operate “when it is known ahead of time that only one twin can survive?” Here, Simms gives a violent, negative shake of her head. “Wouldn’t happen,” adds Louise. The list continues: should the pregnancy be terminated? Guess you’ve answered that one, I note. Simms giggles. If there’s a reasonable chance that separation will succeed, “and if the family refuses, should legal remedies be sought?”

The final question inspires a family debate. Douglas wades in. Say the doctors want to operate with a 60-40 chance of success and you refuse, he asks Simms, “who gets the last word?” She flashes grandpa a hard look. “Me,” she says. “Is that even a question?” asks Hogan. True, Douglas agrees, the doctors are likely to follow the patient’s wishes. “But in a case like this,” he persists, “who is the patient, Felicia or the babies?” He grins,

knowing he’s lost this round. “These guys get mad at me: ‘You’re too damn analytical,’ ” he says. “But when you cut into a case like this, it’s a good way to be because you never know what you’re going to run into.”

The debate may be rhetorical. Craniopagus twins are among the rarest of the rare, representing just two per cent of all conjoined twins. There have been some 250 conjoined separations worldwide where one or both twins survive over the long term. Craniopagus twins are rarely successful candidates unless there is a minimal joining of the brains and blood supply, O’Neill writes. “Even then, long-term neurologic problems persist.” Krista and Tatiana have separate brain stems but it remains unclear how much brain tissue they share, says Dr. Doug Cochrane, a Vancouver pediatric neurosurgeon on the twins’ medical team. It will take months of testing as their brains develop to determine the extent of their bond, and whether it is medically possible to break it, says Cochrane, who is consulting with experts on conjoined twins around the world. “I think it is fair to say the anatomy is complicated, and it is complicated even for people who have seen other patients with not similar, but sort of similar, forms of craniopagus.”

Beyond the medical aspects of separating the girls are profound ethical issues, not only for the family and medical staff, but for society at large, he says. “Is society able to accept a person or persons that are this differ-

ent,” he asks. Ultimately it is up to parents to determine what is in the twins’ best interests, he says. “We recognize the authority of the family to make an informed decision, if we can provide them with the information.” Cochrane says he is impressed by the tight family bond that formed around Simms from the beginning. “I think this family has come together with more strength than many of us could even imagine ourselves bringing to this. They are to be commended for that.” Simms has told her doctors she will consider separation if both daughters are likely to survive. “But if they weren’t sure they could save both of them, it just wouldn’t happen,” she says. “Then, it would be left up to them when they get older.” Both mother and daugh-

ter have been online researching other conjoined twins. They’ve been impressed by the quality of life many achieve, even without separation. “The girls, I think, are going to sail right through,” says McKay. “We believe at some point they will be separated. If not, we’ll make their lives the best we can do. This is just a little obstacle we have to put up with. They were given to us for a reason.”

The idea of separation for adult craniopagus twins is both a shared and intensely personal decision. Sisters Ladan and Laleh Bijani trained in law in their home country of Iran. It was a compromise: Ladan loved law, Laleh wanted to be a journalist. Determined to forge separate careers, the 29-year-olds underwent separation surgery in Singapore in 2003, dying within hours of each other of the resulting trauma. Sisters Reba and Lori Schappell, 45, share an apartment in Reading, Pa. Reba, whose lower body is weakened by spina bifida, uses a wheeled stool she designed herself. She has forged a career as a country singer. Lori, the more outspoken and physically able, has worked in a hospital laundry between her sister’s musical gigs. While the two share some brain matter, they have distinct personalities and independent views. Neither wants separation. “No, we’re fine just the way we are,” Lori told interviewer Larry King. “There is never a 100 per cent guarantee and we wouldn’t risk that at all.”

‘Fairies are all different.’ —Felicia Simms Krista came in a dream. It was only later she realized it was the name, spelled differently, of the curious and beautiful fairy in the cartoon movie Fern Gully, a favourite of her daughter Rosa’s. Tatiana is named after a fairy, too. “Her name means Fairy Queen.” Simms has grown immune to the dumb queries of journalists, so questions about the powers and properties of fairies faze her not a bit. There are the sugar plum fairies of Christmas, she explains. There are spring fairies, “they help the flowers bloom.” There are banshees, who mark death with their screams, and many, many more. “They do come in all different colours and they sparkle.” But are they real? “I think some fairies do exist,” she replies. “I believe an angel is a type of fairy.”

Simms has a confounding air of otherworldly calm. Sometimes, she concedes, she feels her panic rising, but she accepts her angels for what they are, and deals with

the challenges as they arise. As Hogan readily admits, “I’m the one who gets worked up.” In the days after their births, it was possible to put a soother in the mouth of one girl and have the other stop crying. That is less likely to happen now. Krista and Tatiana are asserting their individuality. Already the family sees attributes of the parents in the girls. Krista is the quiet one, like her mother, they agree. “Tatty has my attitude,” says Brendan. “Very bad.” Grandmother McKay agrees. “They balance each other out.”

Their mother has had no difficulty from the beginning seeing her babies as individuals. She claims she could tell them apart in her womb. Still, often when she watches them cry or eat or dream, she wonders about that part of the brain they share. “I’m like, I want to know what you guys are thinking. Are you guys hearing each other thinking?” She shrugs, “Who knows?”

Think of the arguments they might have, says their father: “ ‘Dad, tell her to get out of my head.’ ” And then what, asks mom. “If one of them needs to be punished and put in a corner, the other has to go with her.” And she laughs, everybody laughs, at the wonder of it all. M

ON THE WEB: For more photos and video of the twins, www.macleans.ca