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‘There is no normal in this family’

For the conjoined twins, every checkup is costly and complicated


 
'There is no normal in this family'

Photograph by Brian Howell

On the last day of February, the family of Krista and Tatiana Hogan, Canada’s only conjoined twins, piled into a van leased by the provincial government for the journey southwest from Vernon, B.C., to Vancouver for a week-long series of medical appointments for the girls. The trip almost ended in disaster when they were caught in the midst of a multi-vehicle pileup during a blizzard on the mountainous Coquihalla Highway. They narrowly missed hitting a vehicle stopped on the highway during whiteout conditions. Louise McKay, the twins’ grandmother, put the van into a skid, stopping sideways on the road. Behind them, a car crashed into a semi-trailer and two pickups slammed into ditches on either side of the van. “God was looking after us,” says McKay.

The frequent medical trips to Vancouver, a 900-km round trip, are taking an increasing emotional and economic toll on the family, which subsists largely on social assistance and disability payments from the provincial Social Development Ministry. Money is so tight that they say they’re left destitute meeting the extraordinary needs of the 4½-year-old girls—craniopagus twins who are joined at the head and share a bridge between each girl’s thalamus, a part of the brain that relays sight and other sensory information.

McKay says the family used much of its March rent money to finance part of its recent trip to Vancouver, where the twins had a series of checkups and tests. They fear they’ll  face eviction if they don’t come up with the month’s $1,750 rent. Adults in the extended family of 14 sometimes go hungry to ensure there is food for the children. “We’ll go a couple of days sometimes without eating anything. As long as the kids are fed, we’re okay,” says McKay, who has diabetes, and who has a small disability pension for an anxiety disorder.

Felicia Simms, the twins’ 25-year-old mother, says she suffers from a stomach disorder that is worsened by a poor diet. “We’re supposed to eat, especially with mom’s diabetes and my eating problems. If we don’t eat it makes things worse,” she says. “I mean it’s really stressful.” Adding to the woes, Brendan Hogan, the twins’ 27-year-old father, has a preliminary diagnosis of Crohn’s disease.

Simms says British Columbia has been dialling back its support. Both she and her mother say they were told last month the province will no longer pay the cost of gas or food for medical trips to Vancouver, “unless it was an extreme emergency,” though it will pay hotel costs. The ministry, in a written response, denies this, though it is putting limits on the use of the van it rents for the family. An official said it will continue to pay for up to four adults (the twins’ parents, who don’t drive, and two grandparents) to accompany the twins on medical trips to Vancouver.

“The Ministry of Social Development understands that the Hogan twins and their parents have extraordinary special needs and that is why the ministry has strived to ensure they have everything they require in order to meet them,” the ministry said in an email late Monday to Maclean’s. It noted a January trip to Vancouver cost the ministry $1,785.12, including two hotel rooms for five nights, $196.12 for gas and $300 for food for five people. McKay says it costs the family at least $600 more than that per trip. Gasoline costs about $300, and it is impossible to feed five people on $60 a day, she says. “They’re making it sound like everything is peaches and cream,” she says of the ministry’s response.

The twins are surrounded by a support group even the family admits is unconventional. Krista and Tatiana have two sisters and a brother. McKay is also raising her eldest son’s three other children. All told, when parents, siblings and cousins are included, there are 14 people living in the rented 10-bedroom house, a former old-age home. “There is no normal in this family,” McKay cheerfully admits.

That said, the twins are thriving, under the careful supervision of a medical team at B.C. Children’s Hospital in Vancouver. Last week’s visit was typical. They spent a night in hospital with their mother for a sleep study, because of Tatiana’s occasional breathing difficulties. There was a checkup by their pediatric neurosurgeon, by a dentist, by their heart doctor. Electrodes measured their brain activity and an electrocardiogram monitored their hearts. The girls were pronounced in good health, their mother says, though they’re due for more tests later this month.

The twins were in high spirits last week, running between two connecting Vancouver hotel rooms, spinning in a rotating desk chair, showing off their ability to do leg splits. Their speech, while still initially difficult to understand, continues to improve. “I am going to school,” Krista proudly told a visitor from Maclean’s, a reference to a Smart Start preschool that is readying them for kindergarten next year.

McKay says it would cost the province vastly more if the twins were in institutional care—something the family would never allow to happen. The family also wonders if the hospital couldn’t foot some of the expenses. “They’re using them for study, they’re in clinical books and medical journals,” McKay notes. “They get funding for that kind of stuff.” As for the province, it opened the door a crack to further help. “The ministry understands the challenges this family are [sic] facing,” it says in the email, “and is more than happy to meet with them to determine how we can assist.”


 

‘There is no normal in this family’

  1. Seems to me that this family should not be breeding. It has nothing to do with the handicaps of the 2 little girls, but that they could not afford the children they had before. Seems there are 4 adults in the home that are not working, that our government is supporting. 4 adults to take the children, at tax-payers expense for medical checkups! Would it not be cheaper for the parents to get their license. Just another family that is living off the system and complaining that they are not getting enough! If you have no food, why not get a job! An anxiety disorder, stomach aches and chron's disease seem like lame excuses. There are many people with worse that hold down full time jobs to support themselves and their families!

    • I think I agree with you 100 per cent — the current hardships have less to do with the conjoined twins and more to do with their family. An extended family of 14, all living together — but none of them work?

      No reason for 4 adults to go on car trips; parents — learn to drive, my good lord, kids on farms can drive at age 10. It's not hard.

      Seems to me the ministry is showing them the writing on the wall. Somebody better read it, and I think maybe a few of the people in that house can either start kicking in to the rent, or go somewhere else. Your girls are special-needs, and you cannot expect the rest of the world to fill all of those needs. They deserve better, okay?

      Poor little girls have enough to contend with in life; what a shame to have lazy, unskilled parents — who I must point out are in their TWENTIES and seem to see no future in education and work.

      • I'm going to reply to my own comment to ask the ministry in question to please put the monies you are pulling back into some skills training for the parents — send them to driving training; send them to some kind of job training. Give them the skills they need to properly look after these special needs children.

  2. What a horrible life awaits the conjoined twins as they age. Hasn't anyone in that family seen that documentary about those 2 cojoined twins in U.S. who are about 30 yr. old now? What were parents/family thinking? They weren't thinking obviously. Wouldn't twins condition have shown up on ultrasound and twins could have been aborted. Parents, family would have greived for awhile but then would have gone on with their lives. Doesn't make sense to me to beging with. For whatever reason mum decided to have these twins, as babies they should have been separated; sad/tragic that 1 would surely die; but is current situation better? Don't know if OB-GYN to blame along with parents; but someone really screwed up! Seems criminal to me to have let these twins to be born!

  3. Long before the twins arrived this family was disfunctional – living off social assistance and disability – Adult children lay on the couch all day eating junk food – and are covered in hundereds of dollars of tatoos and piercings – this family eats out more often then most and have absoultely no skills for budgeting. I highly doubt that the adults have ever gone hungry – they sure do not ever go without new clothes or cell phones and movies. The people of Vernon are fed up with everyone sitting on the couch while the grandmother and grandfather work themselves to death. Brandon, Felicia, Doug Jr. and the rest of you need to get a job and support yourselves – and you all need to quit having babies until you can pay your own way! And Doug and Louise you need to kick your kids out so they have to grow up and start becoming productive members of society.

  4. There is something wrong with you if you cannot feed 5 people (shouldn't it say six, or do these parents count their twins as only one person?? Even six shouldn't be hard) for ONE day with $60.
    I can feed two of us for A MONTH on $60 if I really need to. It's called cutting back, normal people do it every day.

    Not to mention, if none of you are working, why do you need to stay in Vernon if you are fully aware that your childrens' medical needs cannot be met there? If you need to drive to Vancouver every month, just MOVE there. Rent is the same in the suburbs of Vancouver as it is in Vernon.

  5. A mother at 16? They should have stopped after the first child. No education, no work. They need to grow up and show their existing children what responsible adults are like. And get their tubes tied. Remember octomom?

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