A seven-year-old child from Mistissini has already gone through more pain and suffering than most people go through in a lifetime. Dancing Water Binette-Wapachee underwent open-heart surgery at Ste. Justine’s hospital in Montreal in mid-December for the third time in her short life.
Her mother Alice was with her every step of the way. “They opened her heart and took the blood vein from her leg and put it in her heart,” said Wapachee. “There was a little blockage during the operation so they had to put her on a pacemaker for a little while.”
At press time, Dancing Water and her mother were heading home to Mistissini.
Her mother told the Nation of her harrowing journey in life thus far. “She was born with half a heart,” she said. “They waited until she was five days old for her first open-heart surgery. They kept her open for 10 days.”
“At one point there was too much liquid going to her lungs so they put a plastic tube for three days, but they had to take that off because it didn’t work. Then they put the blood vein to her heart and that worked until she was about six months old and she needed another operation,” said a distressed, yet relieved, Wapachee.
Wapachee told the Nation that during that first operation, Dancing Water’s heart was actually removed from her chest for 14 minutes in order to retrieve a blood vein from her chest and connect it to her heart.
Less than six months later, doctors performed the same surgery, this time taking the blood vein from her arm.
The purpose of re-rerouting the veins to her heart, according to Wapachee, is to help the heart pump enough blood to keep her body going. She was born without two of the four valves needed to make her heart work properly. To make matters worse, the two working valves are frequently blocked, forcing doctors to connect another source – in this case a blood vein – to keep her going.
“I’m glad it’s over, I’m glad she’ll be like a normal seven-year-old,” said Wapachee, understandably choked up by the reality of her daughter’s situation. “She’ll be more able to run and jump without getting tired so fast. And she’ll be able to go to school more.”
On top of worrying for her little one, Wapachee also had a run-in with the Cree Health Board on December 11 on her way to the hospital. When the CHB went to pick them up at around 11 pm at the bus station in Montreal after a 14-hour ride from Mistissini, the driver told them that they couldn’t get in because there were too many passengers.
“When I got off the bus, Shawn (she doesn’t know his last name) wanted to know if I asked if I could bring the kids. I said I didn’t want to leave my kids behind, especially my three-year-old. He said, ‘There is no paper that says you were bringing your kid,’ so I told him that I asked the clinic in Mistissini if I could bring the kids and I’d pay for their trip and for where they were staying. I told them that I need my kids here, this is a major operation. I can’t do it by myself. They agreed.”
“He said, ‘It’s not on the paper, you’re on your own.’ And he left. I called my sister and she told me which metro to take to get to her place.”
The driver had left Wapachee and her three children to fend for themselves.
A letter was faxed to the Nation by the CHB after numerous inquiries about the situation. Dianne Reid, Chairperson of the CHB responded:
“Maybe there is work to be done to further inform the population on the application of the policy of the NIHB (non insured health benefits) program that serves patients of the Cree Nation. Certainly a better understanding of it would prevent situations such as the one that you are inquiring about.”
Despite the turmoil, Wapachee was feeling upbeat and very happy to have her daughter back. “She looks healthy. She’s her normal colour now. Before she was pale and her fingers were purple and her little heart didn’t pump enough to circulate in her fingers and her lips. But she looks beautiful now,” said a beaming Wapachee.
Dancing Water’s family raised quite a bit of the money needed for her transportation, spending money in Montreal and other incidentals. The family raised $1,500 and another $1,000 came from the Mistissini band.
The Wapachees have traveled back and forth for the past three months to Montreal, knowing that eventually it would be their time to fix the little one’s heart.
“We’ve known about all the steps and surgeries all along. The doctors didn’t know why it happened to her, but told me early on that they’d have to perform these surgeries,” said Wapachee.
She wondered, however, if a bout of Tuberculosis she suffered before becoming pregnant with Dancing Water might have been the catalyst.
“I was on heavy medication for my TB and they told me not to get pregnant. After I was finished with the pills, they told me to wait six months before I got pregnant. But I got pregnant with her before the six months were up, that’s what I blame it on.”
Despite the situation, Wapachee is looking forward to the future, when her daughter’s problems can finally be put behind her.
“We’re hoping she will be okay at least until her early 30s. Then she will probably need a heart transplant.”