When the Butt family of Bishop’s Falls headed to Miami on March 28, their last trip as a family of four before their eldest son finishes post-secondary, they left with all the expectations of a picture-perfect vacation. What they experienced, however, was anything by picture-perfect. Roberta, Arch, and their children, Justin and Jessica, sat down with the Advertiser to tell their story, and to prove that the strength of family, and love, can conquer anything. This is the second in a three-part series to introduce you to the family, tell you of their journey, and why they never want to see the inside of a Miami hospital, ever again.
It’s a memory that’s foggy at best, but when Roberta Butt recalls those first moments, it’s enough to send chills down your spine.
“I (remember) I was on the stretcher and I was laid down, and I heard the doctor say, ‘if she’s not in surgery in two hours, we’re going to lose her,’ and all I could think was, ‘oh my God, I never kissed the youngsters,’” she said.
“Because I knew I was going to die. I knew that before I left the hotel.”
Roberta’s husband Arch had taken his wife and two children, Jessica and Justin, to breakfast that morning, Saturday, March 31, during their vacation in Miami, Florida.
The Children’s Wish Foundation of Newfoundland and Labrador sent the family. It was a dream of Justin’s, who suffers from Marfan syndrome, to take in a three-day WWE Wrestlemania event.
The hereditary condition was passed to Justin from his mother – and to her from her father.
Roberta knew heart trouble was a symptom of the condition, but until that morning, had no idea her aorta, the main blood vessel in your heart, was tearing.
“I can’t remember having breakfast or going to the hospital,” Roberta said. Her husband Arch rushed her off to see a doctor when he noticed something was wrong.
“I can remember parts of being in the waiting room…and I remember looking around and grabbing onto Arch and saying, ‘please don’t leave me,’” Roberta vaguely recalls, memories dotted with bloody imagery of others in the same waiting room.
But overhearing a doctor say she would need surgery was enough for Roberta – she knew something was terribly wrong.
The Butt family knows what to avoid to keep from aggravating the Marfan condition – stress and anxiety – but that would be easier said than done for Roberta in the coming days.
“When she took sick down there, the first thing they told me was she couldn’t fly back home,” Arch said, explaining the altitude would have effected her blood pressure.
This wasn’t the Canadian health care system the Butts had grown accustomed to in Newfoundland.
There they were, Arch and Roberta, in a hospital, in Miami, with many more questions and concerns than answers.
Arch contacted his health insurance provider and told them of the situation.
“He said ‘we’re going to send you to North Shore Medical Center,’” Arch said, and when the doctors advised against calling an ambulance, he flagged down a taxi, and put his sick wife in the back.
Not the hospital they expected
The sandy beaches of St. Pete, Fort Lauderdale and Orlando where vacationers bask in the sun seemed miles away as Arch scanned the streets they were traveling.
“Right on down to the other end of (Miami) in a very, very hard spot,” Arch described. “There are ladies and children out in tents on the side of the road selling water…I could tell you some stories.”
Even more eye-catching for Arch were the facilities he was passing en route.
“On the way down, we drive by the University of Miami Hospital, and we drive by the Mount Sinai Hospital,” he said. “The Mount Sinai Hospital has a (sign) up as being one of the best hospitals in all of the US for heart conditions, and the University of Miami Hospital is suppose to be the top hospital down there.”
Arch said he didn’t request a specific hospital through his health insurance, and without knowing any better, they sent him to the cheapest one around.
“There’s a gentleman there in handcuffs that’s screaming on the top of his lungs with two police officers holding onto him,” Arch said of the waiting room. “You can tell he’s just fried on something…I look over and I see (what looks like) three prison cells…it’s almost like a sponge room…they put him in the room. We walk by another man, it looks like a gunshot to me, he’s just lying there (on the bed) and the blood is running out of him, on the bed, and dripping on the floor.
“Because I knew I was going to die. I knew that before I left the hotel.” - -Roberta Butt
“(Roberta) grabbed me by the arm and said ‘Arch whatever you do, don’t leave me here.’”
Roberta, in her condition, was immediately sent to a bed, and sedated for four days, in ICU.
“For four days, I didn’t even speak to her,” Arch said.
Instead, he spent those days leaving Justin and Jessica in the safety of their hotel room, and took taxis back and forth to the hospital. Once darkness fell, he said, you couldn’t get a cab – they wouldn’t travel the dangerous streets once the sun went down.
Arch would visit, talk to doctors, ask what they were doing for his wife, and hold onto hope she would be ok.
“’We don’t have anything here for heart operations,’ (the doctors told me), ‘if anything happens, there’s nothing (we) can do,’” Arch said.
For a Marfan patient, once the aorta tears, Arch said, it can burst. The odds weren’t in Roberta’s favour – if that happened, chances were, it would be fatal.
They refused to transfer her to another hospital because she was unstable. They couldn’t operate.
Roberta tears up when she talks about it.
“They just told Arch there was nothing they could do, and to be prepared to bring a body bag back to Newfoundland,” she said.
Feared for her life
Although heavily medicated, Roberta recalls waking up in the middle of the night, confused and unsure where she was.
“I didn’t know if I was dead or alive…the last thing I heard was ‘if she’s not in surgery in two hours, she’s going to die,’ so as soon as I’d wake up, I’d (touch my chest), and there’s no bandages? I’d wonder, Am I dead?”
Scared and alone, Roberta wanted the one thing she ran to in times like these – Arch – but the nurse she’d see when she awoke in the night was less than helpful.
“She looked at me and said, ‘bloody Canadians, why don’t yee stay home?’ And she walked away from me…she said I was a stupid Canadian, and asked ‘why is Canada sending their garbage down here to get fixed up, I thought you guys had the greatest health care system in the world?’”
She explains that one night, they gave her what looked like a Cornish hen for her supper, but the sight alone made her weak.
“I asked if I could have some jello or pudding or something, and (the nurse) said, ‘excuse me, this is not take-out,’ and she just walked right away from me.”
At one point, Roberta said, she remembers hearing there was a bomb scare at the hospital.
“And honest to God, all I could keep thinking was, ‘oh my God, who’s going to save me? Everybody hates me here because I’m Canadian.’”
Arch spent days getting nowhere with the doctors, asking questions, but getting nowhere, he said.
He requested she be moved to another hospital with a team of doctors better equipped to handle Roberta’s heart condition, but to no avail.
During each visit, Arch would have to be ID’ed, his photo taken, and a visitor’s sicker attached to his shirt.
“The bathrooms and kitchens were locked and you were only allowed in the room they gave you permission to visit,” he described.
He had seen enough and was tired of waiting.
The last straw
Like most hospital stays, Arch was starting to recognize faces, and make a friend or two in a hospital that otherwise felt unwelcoming. One man, a nurse, really earned his trust.
“He served in Afghanistan. He was a medic with the marines,” Arch said, adding the man now worked at the hospital as a nurse in the ICU, and was working towards becoming a doctor.
To protect his identity, Arch wouldn’t say his name.
But one day, while his wife remained in the hospital bed, the nurse cornered Arch in the hallway.
“He said ‘don’t tell anybody, don’t open your mouth, don’t say nothing…Arch, get her out of here…they’re not transferring her because (your health insurance) is paying about $10,000 a day…they’re using your wife as a meal ticket,’” Arch said.
That was all he needed to hear.
See Thursday’s edition of the Advertiser for the third and final installment.