By Megan Ogilvie, Toronto Star, October 22, 2011
Six months into her first pregnancy, Sadie Stout was faced with a heartbreaking decision: Save herself or save her unborn baby.
The 21-year-old from Thunder Bay had an extraordinarily rare tumour growing inside her heart.
Surgeons at Toronto General Hospital called it a ticking time bomb. They feared a piece of it could break off at any time and swish through her bloodstream to lodge in her brain. They wanted to operate immediately.
But Stout was pregnant. Only 17 other women in the world had ever had this kind of tumour in her condition. And no one was sure whether her unborn baby boy would survive the risky surgery.
After a slew of tests and hours of consultation, her team of doctors — heart specialists at Toronto General and high-risk obstetricians at Mount Sinai Hospital — presented Stout with three treatment options. She had just one day to make her decision.
Up until doctors discovered her tumour, Stout had thought she was having a healthy pregnancy.
Her ultrasounds showed nothing out of the ordinary, and she generally felt well and had enough energy to keep up with her class at Everest College where she was studying medical office administration.
There were some days when Stout was tired and had trouble catching her breath. But she and her mother, Louise Chambers, attributed the symptoms to her asthma and the normal fatigue that comes with pregnancy. It was only when Stout had heart palpitations while relaxing on the couch that Chambers became worried.
She asked a cardiologist at Thunder Bay Regional Health Centre, where she works as a housekeeper on the cardiorespiratory ward, whether her daughter’s symptoms were unusual. The doctor said Stout should have an echocardiogram to make sure nothing was wrong with her heart.
Four days later, on Monday, Sept. 19, Stout and Chambers were flying to Toronto to meet with doctors at the Peter Munk Cardiac Centre at Toronto General Hospital.
Dr. R. J. Cusimano, a cardiac surgeon with a world-renowned expertise in tumours of the heart, took on the case. He confirmed Stout had a cardiac myxoma, and that the tumour, three centimetres in diameter, was growing in the upper left chamber of her heart.
Cardiac myxomas are often benign, but must be removed and the heart repaired. Cusimano describes the tumours as gelatinous — like a jellyfish — with dozens of fanning fronds.
“The problem is,” he explained, “your heart beats 100,000 times a day, so these things have 100,000 chances a day to be knocked off and go flying.”
Since 1990, cardiac surgeons at Toronto General have performed 30,000 heart surgeries. Just 148 of those were for cardiac myxoma. Until Stout, Cusimano had never seen that kind of tumour in a woman who was pregnant.
After being admitted to Toronto General, Stout had numerous tests and was seen by 22 different doctors, a mix of cardiologists, heart surgeons, obstetricians, pediatricians and anesthesiologists. She was completely overwhelmed.
“I don’t think I’ve ever cried so much in my life,” said Stout.
On Thursday, Cusimano and other members of the care team provided Stout with her options.
Doctors could remove the tumour right away, but there was a 30 per cent chance her baby would die during the operation. If he lived, her baby would likely have long-term physical and developmental disabilities.
Stout could choose to have an emergency C-section before undergoing heart surgery. Her baby, though, would be born 21/2 months premature, and doctors would have to closely monitor Stout to ensure the tumour didn’t break off while she was in the delivery room.
Or Stout could wait until her baby was more fully developed to have the two operations. Doctors warned her she could have a stroke — maybe even die — any moment during the delay.
Dr. Kellie Murphy, a high-risk obstetrician at Mount Sinai, said the team of doctors involved in Stout’s care believed each of the three options had equal merit.
“All of us were really not sure which way to go. I could have gone around and made good arguments for each one.”
One thing the team agreed on was that the deeply personal choice be left to Stout.
“Any decision she made would have been right because it would have been the right one for her,” Murphy said.
Stout said she made up her mind almost immediately.
“I decided I would have him before doing anything with me,” she said. “I wanted him to have a chance to survive before me. There was no way I would be able to do the surgery while being pregnant knowing there was a chance he would die from it.”
Not everyone felt the same way. Some family friends, a nurse in Thunder Bay, even her mother for one brief moment, thought Stout should put herself first. They intimated that Stout could always have another baby if she were healthy.
“They weren’t saying it meanly,” said Stout. “They were saying that I hadn’t met the baby yet, that I wasn’t attached. But even when I was pregnant, Bentley was my whole world. I would never choose myself over him.”
On Saturday, Sept. 24, at midnight, Murphy and her team delivered Bentley by C-section. They went slowly, carefully monitoring both mom and baby. Bentley was just three pounds when he was placed on Stout’s chest.
According to statistics, babies born at 28 weeks gestation have a 7 per cent risk of dying and between 10 and 20 per cent risk of having long-term disabilities, such as deafness, blindness, cerebral palsy and developmental delay.
Murphy said the delivery went as well as it possibly could. Stout even got to hold Bentley on her chest for a few minutes before he was whisked away to the care of pediatricians.
Less than 36 hours later, Stout was having major heart surgery.
The four-hour operation was a success, according to Cusimano, who carved out the tumour and carefully rebuilt the organ.
Five days later, Stout was discharged from hospital. She was bruised and in pain, but Stout couldn’t wait to go across the street to Mount Sinai’s neonatal intensive care unit to visit her baby.
“I had so much ambition to be good for Bentley that made me get up and get better sooner.”
Three weeks later, Bentley remains in an isolation unit in Thunder Bay’s health centre. Stout visits every day.
She still feels the same way she did when asked to make her tough decision.
“I knew, in my heart, he would be okay.”