SOMBA K'E/YELLOWKNIFE
Nearly three months premature and weighing only 2.4 lbs, Anabel Brost was not supposed to have a fighting chance.
Aryana and Anabel Brost are a rare set of twins who were born nearly three months premature. Anabel, on the right, needs a heart transplant. - photo courtesy of Matthew Brost |
Doctors had written off her chance of survival but parents Trish and Matthew Brost of Yellowknife refused to give up without a fight.
"Every one of all the team members - pediatrics, neo-natologists, cardiologists and the heart transplant team - at the time tried pushing us into doing 'compassionate care,' a polite way of letting a baby die without trying any other possible solutions," said Trish, 33, who remains in Edmonton with Anabel and twin sister, Aryana, awaiting a surgery date to replace a shunt in Anabel's tiny little heart.
The twins were born by emergency caesarean section Oct. 3 at the Royal Alexandra Hospital in Edmonton after doctors decided they couldn't wait any longer. Anabel and Aryana are a rare set of monoamniotic twins, meaning they shared the same placenta and amniotic sac. If they hadn't split in the uterus when they did they would have been born conjoined.
The original due date was Dec. 24 but when the Brosts were told there was something wrong with Anabel's heart during a 20-week ultrasound checkup, the Brosts came up with a plan to go to Edmonton at 26 weeks.
Doctors had hoped to deliver the twins at 34 to 35 weeks to allow them more time to develop, which is very late for monoamniotic twin deliveries because of the dangers of umbilical cord compression and cord entanglement. But the cords indeed became knotted, requiring an emergency delivery at 28 weeks.
"Aryana was OK, she was healthy, a stage 3 preemie born at 2.9 lbs. She had no major problems, she was just very tiny. But a great weight for a 28-weeker," said Trish.
"Anabel is a completely different story. Once our Anabel was born, holding our finger, the round table of specialists and doctors had weekly meetings with us and told us that it was now unethical and immoral to continue with any hope and treatment."
The doctors wanted the couple to pull the plug and just continue with compassionate care but Trish and Matthew refused.
"How could we do that?" said Matthew, 39.
"She's a fighter and we owe her every chance. We owe our family every chance."
Matthew was flying back and forth between Yellowknife and Edmonton, looking after the three older children Olivia, 12, Kaleb, 9, and Gabriel, 6, and running his business, Renewable Resources Plus.
"My husband was continually flown to Edmonton for these meetings," said Trish.
"We would go head to head with them and deny them their course of action they felt was the proper route and we demanded that they give her every fighting chance," said Trish.
They looked at alternate treatments, researching care in Boston and Philadelphia, but the costs were too high.
However, Anabel defied the odds anyway and began putting on weight. She made it through her first surgery to install a shunt on Dec. 14.
"Once this large panel of doctors found out she made it through her first surgery they were the first people to give my wife the biggest hug," said Matthew.
Still, the road ahead is full of plenty of risks. Anabel will need a heart transplant if she is to survive her childhood. She has recently been placed on a waiting list.
Currently, Trish stays with Anabel, now 10.2 pounds, and Aryana, now 14.5 pounds, in Edmonton and Matthew visits every few weeks.
"Anabel was discharged at the end of January. It was her first time sleeping somewhere other than a hospital room. We all stay at a special private care house and Anabel is scheduled for her very first open heart surgery at the end of April," said Trish.
"Her shunt is at risk for clotting, which is why Aryana and I have to stay in Edmonton. If her shunt gets a block she will turn blue and have to have surgery ASAP and that can't be done in Yellowknife."
The entire family has only been together once, in December when Matthew and the three other children were able to fly to Edmonton.
"It's expensive for all of us to go," said Matthew. "That and there's still a business to run here."
While it has been a battle, the couple knew Anabel was worth fighting for. Looking back, Matthew says he understands where the doctors were coming from.
"They look at odds and statistics. We'd leave those meetings in tears but we wouldn't be the only ones," he said.
After Anabel's next surgery in April, Matthew is hopeful she will be able to come home to Yellowknife with the rest of her family. There has been a lot of support for the couple.
"My wife and I could not get through this ordeal without the help, patience and unmatched support of our family and friends," said Matthew.
"We're also very lucky to have the cardiac team and the (neonatal intensive care unit) nurses. Without them we would not be where we are today, even though it was rough at first."
