BC CHILDREN'S HOSPITAL VIDEO

Focus on the Family

http://www.scribd.com/doc/111252379/Conjoined-twins-Tatiana-and-Krista-Hogan

an amazing story of hope and love

 

Conjoined twins Tatiana and Krista Hogan waiting for their routine checkups at BC Children’s Hospital in Vancouver.

Photograph by: Mark Yuen

Part 1 of 2: Read the second instalment in Saturday's paper or at vancouversun.com.
Tatiana and Krista Hogan hold hands.
The twins are as delicate as the fairies for whom they were named, small for their six years on earth, with pale skin, long feathery lashes and pretty, glacial green eyes.
Their heads tilt gently toward each other as if by choice, or a gesture of affection, the exact place where their skulls are fused barely visible behind wisps of brown hair.
When they sit, or kneel on the ground to page through a book, their bodies lean in, head-to-head at the tip, then arc to either side, outlining the shape of a single, perfect heart.
Today they perch on a sofa between the two women raising them in Vernon — their grandmother, Louise McKay, and their mother, Felicia Hogan.
Louise covers Tatiana’s eyes.
Felicia holds up a small stuffed animal in front of Krista’s open eyes.
“What am I holding?” she asks Tatiana.
Tatiana, her eyes completely covered, hesitates.
Her mother prompts her. “Tati, look through your sister’s eyes.”
There is a pause, a breath held.
Then Tatiana, eyes covered, somehow floats into her sister’s brain: “The Lorax!” she announces.
In order to see through each other’s eyes there is some internal shift, a decision, as if each sister’s soul moves over and makes space for the other.
The moment, repeated at will or on request, is as magical every time as the last. Each girl can see through the eyes of the other: a purple crayon, a teddy bear.
Recent functional MRIs demonstrate that physical sensation can be a shared experience too: one can feel the touch of a hand on the other’s kneecap, identify a particular toe being tugged, laugh when her twin is being tickled. They also may share some motor function.
This seemingly magical ability — to see through each other’s eyes, to feel what the other experiences, perhaps even to share thoughts — has stunned neurologists and makes these tiny girls unique in the world.
They are conjoined not just by flesh and bone. Their brains are “zippered” together by a neural bridge between the thalami, the sensory processing hubs of their brains.
This bridge, which the girls can flitter across at will, has raised questions and inspired a sense of wonder among even the most seasoned specialists.
How does it work? What are its limits? What could it mean to our understanding of the ability of the brain to change and adapt? What does it mean in terms of how we understand the development of personality, empathy and consciousness?
What does it feel like to literally see through another’s eyes?
See more pictures of Tatiana and Krista Hogan here
Their grandmother, Louise, has more practical questions: What is it going to mean as the girls, now in Grade 1, go through school?
Krista’s a prankster to begin with, she explains. A universe of startling possibilities instantly comes to mind: one learns the math for both, one writes the test for the other.
“We’ll just have to see,” says Louise.
From the beginning, Tatiana and Krista were extraordinary.
Their emergence, first on the murky black of a radiologist’s screen, like the appearance of an unexpected comet flaring in the night sky, generated both alarm and awe.
Doug Cochrane, a neurosurgeon at B.C. Children’s Hospital, was part of a multi-disciplinary team assembled to attend the birth and followup care of the girls in 2006.
He had never worked with a set of craniopagus twins; conjoined twins are extremely rare and those joined at the head are the rarest, with an occurrence rate estimated at one in 2.5 million births. Few survive.
The coming birth became an event for the world to watch as, behind the scenes, physicians and a family prepared for the unknown.
Everyone had questions. Should Felicia, a 20-year-old single mother of two, carry them to term? If she did, would they live? If they lived, what kind of life would they have?
Conjoined twins have historically elicited fascination, not only for their difference and rarity, but perhaps also because in them we see the embodiment of soulmates: two beings fated to live as one, a physical expression of what Plato considered an eternal longing for unity with another, that each human is “driven by a deep longing for its other half, for another to love as oneself.”
Best friends are described as “inseparable” or “joined at the hip”; in romantic love we promise till death do us part.
The Biddenden maids, who lived in AD 1100 in Biddenden County, Kent, England, are one of the earliest documented sets of conjoined twins. Eliza and Kate, joined at the hip and possibly the shoulder, lived for 34 years. According to the story, doctors offered to attempt a separation when one twin died. The remaining twin declined, stating “as we came together, we will die together.” She died a few hours later.
Conjoined twins have also provoked the dark side of human nature and imagination: fear. They were often depicted as monsters, examples of black magic, God or nature gone horribly wrong, destined for lives as circus freaks at best, vulnerable to exploitation and suffering at worst.
As surgical techniques improved throughout the 20th century, separation became the ideal. For the public, a separation story had it all: medical drama, life-and-death stakes, children.
“At the time,” Dr. Cochrane says, recalling the twins’ birth, “the immediate reaction to conjoined twins was, ‘gee whiz’ you’ve got to get them separated. You’ve got to make them normal. They’ve got to fit our social context of what normality is.”
Dr. Cochrane knew that somehow the twins would have to tell him what was optimal. “I became a member of one of the teams trying to support the family and learning with them.”
The first thrill came when they were born, more than six pounds each, perfectly formed, crying lustily, stronger and healthier than anyone anticipated.
The girls, who arrived Oct. 25, 2006, were healthy enough to go home by Christmas. Media interest was intense as the possibility of separation hung like a tantalizing second act: Tyra Banks flew Felicia and the infants to Hollywood for a taping of her TV talk show.
Right away, imaging revealed the depth of their brain connection, their unusual wiring.
“All along we knew that these kids were connected in a way that was different than other craniopagus twins, so the risks of separation would be different than what we might reasonably expect in other circumstances.”
Each child has a fully structured brain, two cerebral hemispheres, a fully formed brain stem, cerebellum and spinal cord. There was also the bridge of tissue, through which neurological information might be shared; within days of their birth, it became apparent that if one twin was pricked with a needle, the other would cry.
Cochrane found the mere thought of separation “frightening.”
Their particular combination of features presented what would be a huge social and physical challenge if they were to live conjoined, but the alternative, he was sure, was worse.
He concluded it was not possible to separate these children without creating a neurological injury more devastating than what they now have to deal with.
“It’s not my role to create injury for the sake of social conformity.”
The decision rested with Felicia. She would have to be thoughtful and courageous. In spite of criticism from ethicists, many of whom believed she should have terminated the pregnancy, the family decided not to risk a separation surgery.
Cochrane is used to the interest in the girls — documentary crews and journalists have knocked on his door, medical experts around the world stay in touch — but when he speaks of the twins, it is with wonder. Beyond the neurological intrigue of their shared brain matter is something unquantifiable.
“They give us the opportunity to appreciate the differences and similarities we all share; we are all human, they are very much human. The fact that they are different just makes them something to be cherished, and not something that goes into the circus.”
Enter the circus
The circus has already come calling. Hollywood agent Chuck Harris, 75, has signed the family. Harris, the so-called Wizard of Odd, represents curiosities like the fire-breathing midget, “Wolf Boy,” and the world’s longest surviving set of craniopagus twins, the 51-year-old Schappell sisters.
Harris has gained the trust of the family and hopes to bring the twins to the biggest big top of them all: reality TV.
Over the phone from Los Angeles, Harris says the Oprah Winfrey Network is interested.
Despite a career as a sort of sideshow barker, Harris convincingly frames his interest in his clients, and the family, as altruistic rather than predatory.
“I represent a lot of oddities, but not because I make a lot of money. Someone has to care for these people. No one cares for them.”
Harris confides that he is concerned about the family’s living conditions. The girls share a tiny warren of rooms in two cramped ground-level apartments with an extended family of 14, including several cats, guinea pigs and a dog.
His voice drops quietly. “The way they are living right now, it’s not good. I just want to help out.”
A few weeks ago, Harris helped the family set up a website on gofundme.com, with hopes to raise $500,000 in order to buy a home suitable for the girls. After a month, only $205 has been raised.
It kills him.
The jury is still out on whether the reality show will get picked up; the family doesn’t share the apple-pie appeal of American conjoined twins Abby and Brittany Hensel, whose “reality” as portrayed on their hit TLC show seems cheerfully perfect. They drive! They’re boy crazy! They’re just like you and me! (Except, of course, they’re not.)
Any part of their reality that includes struggle, fear or limitation hasn’t made it onto the screen.
Complicating things is the issue of consent. Abby and Brittany, who share a torso, are 22. Tatiana and Krista, who have just turned 6, will have no say in whether they get thrust into the limelight or how they are portrayed. They, and the family, will be dependent on the good will, and good intentions, of the producers.
Public scrutiny
Felicia has endured public criticism since the twins were born: some kind strangers sent gifts, but there was also hate mail. The twins were added to an Internet death watch site, alongside Saddam Hussein.
A medical writer with a wide audience argued they should not have been allowed to live.
As a single mother on social assistance, Felicia was the target of public scrutiny that matched, in its darkness, her own stubborn, goth girl personality.
At the time she became pregnant with the twins she lived in a tiny apartment in Vernon. She had struggled to complete high school while raising two kids: Rosa, born when she was 15, and Christopher, who came along two years later. She got her Grade 12 and hoped to get an accounting certificate. The children’s’ father, Brendan, with whom she fell in love when she was 13 and he 15, was in and out of her life.
Even among her five siblings there was frustration.
“When I found out she was pregnant again, I lost it. I called her all sorts of names, even the S-word,” says her half-sister Rhea, now 24. “She already had two kids. The girls’ dad, he’d cheated on her, they kept breaking up.”
Felicia was 21 weeks along when an ultrasound revealed she was carrying conjoined twins.
“It was shock, total shock,” says Felicia. She was terrified.
The doctor brought up the possibility of termination.
“That just wasn’t an option,” says Felicia. She had already felt the twins move. They were hers.
Abort them because they were different? Hell, she was different, too.
Rhea, like everyone else in the family, was stunned, and ultimately transformed by the arrival of the twins. “When she got the news about the girls, everything changed. I just knew we had to help her.”
When the family takes the girls out, Grandma Louise says, they instinctively form a protective horseshoe around them. “You know, like geese, we make a V.”
Rhea always takes up the rear. She is their most fierce public guardian, the one who lashes back when the comments are rude, ignorant or cruel.
“I say exactly what I think.”
Typical kids
Tatiana and Krista charge from one end of the cramped living room to the other, veer perilously close to the stairs, slam into the sofa.
“Do you want to see us run?” chirps Tati. “Follow me,” she cries and her sister complies — they don’t fight as much as they used to. Tatiana is the “engine” and the leader. They scamper back and forth in perfect synchronicity until Tati’s heart pounds.
Krista leans back dramatically, one hand on her forehead.
“I’m sooo tired,” she says.
“Feel my heart,” says Tatiana.
She is a full size smaller than Krista. Tatiana’s heart pumps blood through her own body and to a portion of Krista’s brain; her body works harder than Krista’s; she suffers from high blood pressure, and both are on medication for seizures.
They’ve started Grade 1, which they love, but can attend only half days; the sensory input exhausts them.
The angle of their heads means they have an extraordinary peripheral vision. But just how they receive, process and share sensory experiences is still unknown.
Lunch today was picked up at McDonald’s. Tatiana hates ketchup; Krista loves it. Krista scrapes the breading off her chicken McNuggets; Tatiana likes the breading. Specialists speculate that somehow they can selectively block out sensory input from the other. Ketchup, however, is different: Tatiana hates it so much she screams if Krista eats it.
In their Grandma’s matchbox apartment, the girls’ bed is a mattress on the living room floor. They push it up against the stairs that lead to the basement during the day. There is no money for a custom baby gate, and the mattress has to be dragged aside as people come and go.
When their grandma comes into the room, the girls fling themselves at her. “I missed you,” trills Tatiana. “I love you,” says Krista.
They clamber into her lap.
“I love you, too,” says Louise, drawing them close; four arms encircle her. She rocks.
Louise, who is 51, diabetic and on a meagre disability pension, cares for the twins most days; they sleep here most nights.
Her bond with the twins intensified when Felicia fell ill, and nearly died, during her last pregnancy. The pregnancy was unexpected, the twins were still infants, and Felicia was bedridden for months. The girls call Felicia Mama; Louise is Nana-mama. Until recently, they all shared a home.
Felicia now lives next to Louise with her unemployed husband Brendan, 29, and their three other children: Shaylee, 4, Christopher, 7, and Rosa, 9.
Since getting kicked out of their last place, they’ve been unable to find a home to accommodate all of them.
Living side by side in two tiny, rundown rentals isn’t working. The kitchen is so narrow the girls have to move sideways. There is an open stairwell to the basement. “It’s so dangerous for them,” says Louise.
Daughter Rhea lives with Louise, too; she was going to hair dressing school, but couldn’t finish because there wasn’t enough money for tuition. She had to take a job at KFC.
Louise’s son Dougie, 22, also lives at home, and her eldest son, Kaz, 34, who has struggled with addiction, lives in a Winnebago parked in the driveway while he’s trying to get his truck driving certification.
In this crowded house Louise is also raising Kaz’s three teenage daughters: Cynthia, 16, Lateefah, 15, and Shyann, 11. Louise’s husband, Doug, also on disability after three heart attacks, lives here, too.
Louise, who was a teenage mother herself, is used to making ends meet: she grew up in a family of eight children. Her father, an itinerant laborour, was disabled during the Second World War. “My mother struggled,” she says. “But she just loved us.”
Although Felicia tried to make it on her own, soon after the twins were born it became clear that Louise and Doug would have to step in and help.
Louise’s phone sings from her pocket, its ringtone a childish voice singing a song from a kids’ movie, ‘The phone, the phone is ringing.’
“TK Deliveries,” she says.
She helps Dougie run a small delivery business — pizza, booze, whatever people want — but it’s tough. The family has only one car; every couple of months they have to pack it up to take the girls to Vancouver for the extensive medical care they require.
With all these children, the home is surprisingly tidy: pictures of the family are neatly framed and displayed. More surprising is the lack of toys: there are no tricycles or bicycles, soccer balls, hockey sticks or nets.
Felicia admits they just can’t afford it. Her son Christopher, whom they call “Toadie,” yearns to play organized sports, especially soccer, but it’s beyond their reach.
In the living room, the girls slide off the sofa and spin around.
“I have pretty hair like Miley Cyrus,” says Tatiana, stroking her brown locks.
“I’m the funny one,” declares Krista. She pulls her mouth to the side, sticks her tongue out, and makes a goofy face.
Tatiana grabs her wrist. “Power ranger. Do you read me? Do you read me?”
Krista responds, through her own imaginary wrist phone.
Then they are running again, each of them, two Power Rangers, unstoppable.
They pause, hair plastered to their faces, out of breath.
There is a Miley Cyrus video on the TV, The Climb.
The girls run to the television, stand inches away, hands clasped, mesmerized by the image of the teen star.
They sing in silvery, high-pitched voices. “There’s always going to be another mountain, I’m always gonna wanna make it move, always going to be an uphill battle.”
They know every word.
The girls sway from side to side to the music, unaware that they too might one day be on that screen, beamed into the living rooms of strangers — that all around them the family is wishing, hoping, waiting for something to ease their uphill battle.

Opening The into A Lifetime Commitment

BE COMPLETELY HUMBLE AND GENTLE, BE PATIENT, BEARING WITH ONE ANOTHER IN LOVE.

EPHESIANS 4:2

From where we were to where we are today, it is indescribably amazing how with a single breath of life how this two little lives could…The feeling, the knowledge that many lives’ were about to be forever enriched by these two precious gifts! The dynamics, how they changed, but like kids on Christmas morning, so too did we.

“Anyone who believes in the Son Of God has his testimony in his heart.” - 1 John 5:10

However; in ever thought or deed, any kind of “hatred stirs up conflict, but love covers over all wrongs.” - Proverbs 10:12

 

If there is but one thing I have learned through all of life’s trials, it is that “GOD is not the god of mistakes, but rather HE refines us, giving us the right character traits to fit the circumstances which HE has chosen for us.

Now, I don’t even know if that makes sense, but one thing that I am sure of, is that the ONE GOD of heaven and earth is the GOD of miracles and second chances, I am proof of that as through a series of life events my life has been spared.

GOD has a purpose and a plan, however at one time that thought was the furthest thing from my mind!

Let this be your testimony; there is only one you so let your life’s message be one of desire and passion.  The passion that inspires others with life, however within too tells a story of mistakes made and hopefully lessons learned.  Never however, be afraid of those mistakes grand or small as every situation presents us with a unique opportunity to share what has given us the motivation to pick up the shattered pieces and move on.

Everything has progression; life moves on, but hopefully we will never find ourselves in the dark cavernous valleys place of hopeless desperation.

 

Plagiocephaly Letter