Send Me More Stories About Heart Disease
It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.
A pair of foil balloons–a one, and a seven–bob at the end of of the table in Kaylee Mynot’s South London home. It’s her birthday weekend, and Kaylee has just turned seventeen.
Small and pale, with delicate features and long brown hair tied back in a ponytail, Kaylee doesn’t look her age, but despite her childlike appearance, Kaylee is poised and articulate. She flashes a grin at me from across the table, revealing silver braces. I’ve just asked her if she thinks living with a condition gives her any advantages.
Kaylee on her 17th birthday.
“Um, yes!”, she exclaims, raising a small white hand in a flourish. “I jump all the queues, especially if I’m in my wheelchair. I got to make a wish once, I went to central London in a limo and went to Rainforest Cafe. I met [pop group] Girls Aloud, and went back home in a limo.”
Kaylee’s mum, Kaye, is sitting beside her, drinking a cup of tea. She’s a stylish, older version of Kaylee, with a smile that’s a little more guarded than her daughter’s. She reminds her daughter to eat. “She’s talking too much,” she explains to me. “She forgets to eat.” Kaylee obediently winds noodles around a fork. Noodles are one of the few foods she can stomach, along with chicken, mashed potato and carrots. Sometimes she’ll have green beans. Meals are repetitive in Kaylee’s house.
The pair don’t argue much, but they agree food is a contentious subject. Food has been a problem that dates back to Kaylee’s babyhood, when she couldn’t keep anything down. For Kaye, it was a flashing neon sign telling her something was seriously wrong. The health professionals she spoke to brushed off her concerns, and by the time her daughter was eleven months old, Kaye was tired of Kaylee’s problems being dismissed as “failure to thrive”.
“I went to the doctor one day and said, ‘I’m not leaving until you find out what’s wrong’.”
“I went to the doctor one day and said, ‘I’m not leaving until you find out what’s wrong’.”
The doctor sighed, and to humor Kaye, did an oxygen test. The sixty-eight percent reading was so critically low the doctor assumed the machine was broken. When a second machine gave the same reading, Kaylee was blue lighted to hospital, where tests flagged up a congenital heart defect, intestinal malrotation and pulmonary hypertension, high blood pressure in the lungs. Kaye was told her daughter might live to be five.
“I came home and thought, this isn’t it. It can’t be. I started Googling.” Kaye found a pulmonary hypertension specialist at Great Ormond Street Hospital and managed to get her daughter transferred into her care. Baby Kaylee became one of the youngest candidate for Bosentan, a drug which was being trialled on adults to slow progression of the disease. It worked, and sixteen years later Kaylee is alive and kicking – and still using the drug.
When I ask Kaylee what she thinks of that initial diagnosis, the confident teen disappears and she stumbles a little.
“Um. I don’t know. I think it’s amazing. I don’t know how mum did it.”
Kaylee is a talented photographer. Here’s a macroshot of her mum’s eye.
Kaye is team leader, coach, and head organizer. She has a plan, and if that doesn’t work, she’ll come up with a back-up. “We have options. If you can’t find the good in something then what are you doing in this world? That goes for everybody. You need to have nice things to look forward to. Yes, plans change, but you just find another way.”
“If you can’t find the good in something then what are you doing in this world?”
The first thing Kaye decided was that her daughter would have as normal an upbringing as possible. So like many other London children, Kaylee danced, rode, swam and trampolined her way through childhood. The difference was, her mum would cart an oxygen tank along. “She did all the normal stuff kids do, we’d just do it slower or find a different way. We’d go to soft play [an indoor play centre] and I’d have to go climbing up into the play area with oxygen when she got stuck at the top and felt unwell.”
These days, Kaylee is careful to not push herself too hard. If she doesn’t get enough oxygen she suffers debilitating headaches, and experiences numbness in her hands and legs. She walks – slowly – to the shops with her friends, watches fashion YouTubers and takes photos. She’s studying photography at school and loves to take macro shots, like close ups of a leaf, detailing its veins. At school, she stands in the quiet dark room and develops prints, the old-school way.
Kaylee’s had a bumpy ride through high school. Her peers quickly noticed the smaller than-average girl couldn’t carry her own bag, and left lessons five minutes early to avoid the crush of students hurrying between classes. Kaylee also spent her free time in “base”, a common room for students with special educational needs, and had to leave school frequently for her regular medical appointments. She might as well have walked around with a sign over her head saying “I’m different”, she says.
“Once [other students] know you’re from base, and they saw I left early, got my bag carried, they formed their own opinions. I was just a different animal, and they never wanted to talk to me.”
When they did talk to her, it was to call her “slow”, or to make fun of her small stature. In the last couple of years students in the years below Kaylee at school have begun to comment, which stands out to the senior as particularly unfair.
She’s armed herself with a few tactics to shut down questions and comments. “I’m very outspoken, I’m not afraid to say something. When people ask me why I had my bag carried I would say, ‘because I’m special, unlike you’. Or I’d just tell them to go away.”
“I look scary on paper, but I’m fine in real life.”
“I look scary on paper, but I’m fine in real life,” she says, explaining her frustration at being left out of peer groups.
Now, she has a small but close group of friends. If she ever moves out of home, it’ll be with her best friend, Chloe, she says. Chloe isn’t from base, but like Kaylee she’s on the periphery of school life, and the two became friends after Kaylee noticed her sitting alone on the edge of the schoolyard each day, watching the other students.
Kaylee and Chloe dream of living in a mansion with a white living room. Fantasy mansions don’t come cheap, and Kaylee will need to find a job. As long as she can remember, she’s wanted to be a nurse. But as she’s grown older and her condition has come into sharper focus, the dream is starting to look unlikely.
When she grows up, Kaylee wants to be a nurse.
“Nurses work long hours, they’re on their feet all day,” Kaye says. “We’ve had to change things as we go along.”
Now, she’s thinking about working in childcare. Teaching life skills to children with disabilities, or maybe caring for preschoolers. Her older sister has two small children, and Kaylee loves spending time with them.
Whatever she chooses to do, with an array of medicines, an oxygen tank and other medical equipment to cart around, Kaylee will need to study close to home. “It’s too hard to stay elsewhere away overnight, too much for others to deal with,” Kaylee says.
As well as her older sister, Kaylee has a younger brother and a large extended family. Although Kaye and her husband split up a few years ago, they’re still friends, and eat together each week. Other weeknights are spent with cousins, grandparents, aunts and uncles. The family sound supportive and protective of Kaylee. Her sister has told her that if Kaylee ever wants to have children, she’ll carry them for her.
Kaylee doesn’t take this love and unconditional support for granted. Her greatest fear is losing the people she loves, she tells me. Her long-term prognosis is also a concern. There’s no cure for pulmonary hypertension, and while medication’s doing a good job at keeping her symptoms at bay, there’s no knowing what the future holds.
“Mum’s not going to be around forever. And, there’s the thought that I’m supposed to outlive her. I hope the technology gets better and I can carry on.”
“You will if I’ve got anything to do with it, babe,” her mum says firmly. “We’ll always have a plan, that’s just what mums do.”
