A few days after Mindy Beyer was born, doctors delivered crushing news to her parents: You’ll be lucky if your baby lives until age 3.
Mindy was born with a variety of heart problems. Her ventricles were reversed and there was a hole between them, making it difficult for her heart to efficiently pump blood.
At 1 month old, Mindy underwent surgery to move an artery from her arm to her heart to help improve blood flow. The surgery was a success.
For the next couple of years at home in New Hampshire, Mindy had regular appointments to monitor her heart. She made it to age 3. And then 4.
Doctors warned that when Mindy started school, she might be too weak to last a full day. She would never play sports, they added. Mindy did both.
In middle school, she played field hockey. At 12, she had her first open-heart surgery. It closed the hole in her heart and improved blood flow to her lungs.
The night after surgery, Mindy crossed paths with a mother in the hospital nursery whose baby had been born with a congenital heart defect.
As they spoke, a look of hope passed over the woman’s face as she learned that Mindy had defied the odds given to her at birth. Mindy came away from that conversation wanting to pursue a career helping people with heart conditions like her own.
In high school, Mindy kept up with sports, playing volleyball. She told anyone who would listen that she wanted to be an echocardiogram technician at Boston Children’s Hospital. An echocardiogram, or ultrasound of the heart, had helped to diagnose Mindy.
Mindy moved to Maine, where she earned a degree in cardiovascular technology. Her first job after graduation: an echocardiogram technician at Boston Children’s Hospital.
After a few months, Mindy missed Maine, so she took a job in a Portland hospital’s cardiac catheterization lab. She loved the work, but it was exhausting. In her mid-20s, she went back to school to get a degree in nursing, thinking it would give her more options.
Not long before graduation, she felt exhausted and had episodes of irregular heartbeats.
“Let’s just do an MRI,” said her cardiologist, who was also a friendly colleague.
Upon seeing the results, the doctor sat her down. He said: “You have an aortic dissection,” the technical term for a tear in her aorta.
“I’m not going home tonight, am I?” Mindy said.
He shook his head no. “The surgeon is on his way.”
Before the operation, Mindy made a living will. She wanted her family to know her wishes in case anything went wrong.
The night before, she and John, her boyfriend of five years, went to the hospital’s quiet room. After Mindy shared her wishes with him, John got down on one knee.
“When everything works out OK, will you marry me?” he said.
Mindy didn’t hesitate. “Yes!” she said. She went into surgery beaming.
All went so well that two weeks later, Mindy went to school to take a test. She managed to graduate on time with high honors. With the tear fixed, she and John began planning their wedding. They married and soon after started talking about having children.
A specialist warned Mindy that having children was risky given her history. No one knew why she’d had the aortic dissection. It could happen again, and in her case, pregnancy could increase the odds of it not ending well.
“You have maybe a 20% chance of death if you get pregnant,” the specialist said.
“That’s an 80% chance of not dying!” countered Mindy.
Still, the odds made her nervous. Mindy’s sister offered to be a surrogate. They tried. And tried again, several times over four years. Then Mindy wanted to try herself.
John was worried. What if she fell into that 20%? But as a firefighter, paramedic, arborist and someone who jumped out of planes during his days with the Army Rangers, John took plenty of risks himself.
“The quickest way to get my wife to do anything is to tell her that she can’t,” he said.
Mindy became pregnant within months. A heart exam in utero showed all was well.
As the baby grew, Mindy’s heart weakened. She went on bed rest for three months. Then she delivered a healthy boy named Kyler. Soon, her health bounced back.
Mindy and John settled into family life. Mindy rotated through various roles at work, ultimately heading up her hospital’s heart patient quality improvement program.
Then, two years ago, Mindy was driving when her heart started beating erratically. Doctors recommended an ablation, a common procedure that can essentially burn off the spots causing irregular heartbeats. She agreed.
The procedure turned out to be anything but routine.
Complications in accessing the area led to serious problems. Mindy lost so much blood that she was on life support for two weeks. She spent three weeks in a coma and had several mini-strokes. When she woke up, she had to learn how to walk again.
The hardest part of recovery was healing from damage to her vocal cords caused by having a breathing tube in her throat. She couldn’t swallow or speak for several months. For much of that time, she was fed through a tube in her nose.
The worst part about that was its effect on Kyler; he was scared to cuddle with her until it was removed. As for the repair, doctors wound up ablating a different area than intended in hopes of providing similar relief.
Two years later, Mindy – who is now 46 – advocates for both children and adults with congenital heart defects.
“I see my condition as a positive,” she said. “It’s made me who I am today, opened up so many opportunities and given me a pathway to my passion and my work.”
Mindy is grateful for advancements around treatments and research into congenital heart defects, including a relatively new medical specialty of adult congenital cardiologist. She sees one every six months.
Mindy knows it’s possible her heart will weaken more. But with age 3 well behind her, she now has her sights set on a new number.
“I’m going to make it to my 80th birthday,” she said. “That’s my goal. I’m telling my son to plan the party for me.”
Written by Deborah Lynn Blumberg.
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For more information about health, please see recent studies that Vitamin D deficiency can increase heart disease risk, and results showing Zinc and vitamin B6 linked to lower death risk in heart disease.
