‘There is no normal in this family' - Macleans.ca

‘There is no normal in this family’

For the conjoined twins, every checkup is costly and complicated

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'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.”