As a little boy, Brent Morton would squat down to catch his breath while playing.
It’s how his body dealt with a complex congenital heart defect know as tetralogy of Fallot, which affects the pulmonary valve and prevents a normal blood flow to the lungs.
After surgery as a 1-year-old, followed by more surgery at age 5, Morton did pretty well. So well, in fact, that the 48-year-old Charlotte, Michigan, resident hadn’t seen a cardiologist since the 1990s. At that time, he was told he didn’t need to be seen again unless he experienced problems.
Life changed when Morton and his wife, Kelly, took their then-2-year-old daughter, Audrey, to congenital cardiothoracic surgeon Marcus Haw, MD, FRCS, co-director of the Spectrum Health Congenital Heart Center.
Audrey, who has Down syndrome, had been born with a heart defect. Doctors initially treated her in a teaching hospital, but when the time came to repair a leak in her heart valve, the Mortons chose Spectrum Health Helen DeVos Children’s Hospital.
Morton tears up recalling that experience.
“We love DeVos because of the focus,” he said. “The people who work at the children’s hospital really like kids. It’s just a different focus.”
During the pre-surgery consultation, Dr. Haw learned of Morton’s congenital heart condition and urged him to see Stephen Cook, MD, director of the Adult Congenital Heart Disease Program at Helen DeVos Children’s Hospital.
“Dr. Cook ran some tests,” Morton said. “Then he said, ‘Where have you been? We’re going to take care of you now.’”
Morton didn’t realize the impact his heart defect had on his quality of life. He blamed his fatigue and breathlessness on being overweight. And he attributed afternoon sleepiness to too much time reading legal documents as an assistant prosecuting attorney for Eaton County.
But his issue went beyond a few extra pounds.
Tests revealed right heart enlargement. When Morton was a child, doctors removed his malformed heart valve, and he lived well without the valve for years. But now it was time for action.
This time around, Morton would delay surgery only a few days, allowing him to spend opening day of hunting season with his father and brother.
After that, he let Dr. Haw repair his heart using a bovine valve.
“Before the surgery, I was terrified,” Morton admitted. “But it really needed to be done. And ultimately, a lot of the things I was fearful of were not as bad as I thought they would be.”
After a few days of recovery at Spectrum Health Fred and Lena Meijer Heart Center and weeks of recovery at home, Morton felt more awake and alert.
Now, even when he’s plowing through the legalese at his job, he feels better.
Life is good, he said.
During the summer, he and his wife and their three children keep busy with camping, biking and swimming. And he still plans his schedule around the opening day of hunting season.
When it comes to his heart, Morton wishes he knew then what he knows now.
“If you were born with a congenital heart defect, then you need to get hooked up with a doctor that specializes in that area,” he said. “Because they are going to give you the expert treatment.”
Congenital heart defects occur in roughly 1 in 100 births in the U.S., making it the most common type of birth defect.
Many adult patients with congenital heart conditions are very much like Morton—they don’t recognize the need for lifelong care until they run into problems.
By that time, it may be too late.
“A lot of adult congenital heart patients think they are cured,” Dr. Cook said. “I often ask patients, ‘What is your underlying heart defect?’ And many adults still don’t know.”
To help young patients understand their congenital heart disease and the need for lifelong follow up, Helen DeVos Children’s Hospital has developed a new transition clinic. Beginning at age 13, patients meet with a transition nurse once a year to learn about their conditions. By age 18, they have toured the Adult Congenital Heart Disease Center and are ready for the adult program.
“It’s really a team effort for all of our patients,” Dr. Cook said. “It’s important for patients to be educated about their own disease and receive long-term care with physicians who know how to provide appropriate care for them.”
“How lucky we are in West Michigan to have such a jewel of health care that is focused on the patient and the family?” he said.