Pulmonary Atresia: Justin's Story
For a few minutes after Justin Goucher was born, on a rainy October evening in 1995, everything seemed fine. His parents were congratulated and a nurse carried the newborn away to bathe and swaddle him.
"Then one of the doctors came back and informed me there was
a problem," his father, Scott Goucher, recalls. "That's when everything became a blur."
Justin had begun to turn blue.
Gerald Vekteris, DO, the pediatrician on-call at the hospital, recognized that the baby had a heart problem and ordered medication to stabilize his condition. Justin was taken by ambulance to The Children's Hospital of Philadelphia. "Our baby was whisked away in the middle of the night and taken to a hospital in Philadelphia that we had never been to," Scott recalls. "It was terrible."
The next morning, Scott and his wife, Val, met the group of people that would become an enormous part of their lives: the Cardiac Center team.
Doctors performed a cardiac catheterization, a procedure that shows the heart's structure and function. The test confirmed Justin had pulmonary atresia. His pulmonary valve hadn't formed correctly and was blocked, preventing an adequate flow of blood from heart to lungs. Cardiologist Gil Wernovsky, MD and others sat down with the family to explain the treatment and answer their many questions.
"It was all overwhelming, but we were able to understand what was going on," Mrs. Goucher recalls. "The doctors and nurses were very informative."
At two days of age, Justin had open-heart surgery. The surgeon placed a tiny patch across the valve to open it. After two weeks at CHOP, Justin came home. He returned to the Hospital two months later when doctors felt he was strong enough for surgery to place a more permanent patch. Thomas Spray, MD performed the second surgery.
Before and after the surgeries, Justin's parents remained at their baby's bedside. They were able to hold Justin as he slept and healed, with Cardiac Center nurses positioning the infant in their arms, "with all the wires attached," Mrs. Goucher remembers.
Justin recovered quickly. The nurses taught his parents how to care for the large scar on his chest as it healed. "He healed really well and the scar today looks fine. He's not embarrassed about it," Mrs. Goucher says.
As he grew, Justin had frequent check-ups at the Cardiac Center. When he was five, cardiologist Jonathan Rome, MD performed a catheterization to patch a tiny hole between the upper chambers of his heart, called an atrial septal defect.
Before this procedure, Justin's oxygen-saturation levels (the amount of oxygen in the blood) were in the upper 80s, adequate but not ideal for a child his age. After the catheterization, his levels went to 100 percent.
Today Justin is 13. A straight-A seventh-grader, he plays soccer and baseball and surfs nearly every day in Ocean City, NJ, where the family lives.
Every August he visits cardiologist Paul Stephens Jr., MD at the CHOP Specialty Care Center in Voorhees, NJ. This annual checkup includes echocardiography and electrocardiography. Justin has a stress test (on a treadmill) and cardiac MRI approximately every two years.
In the future, depending on how his heart develops as he reaches maturity, Justin might need additional procedures or a new valve. Currently this requires open-heart surgery. But the Cardiac Center team is working to perfect new, less-invasive ways to perform many procedures. Justin's parents hope that by the time he might need a new patch, it can be implanted by catheter.
Justin will continue to see a cardiologist all of his life, eventually transferring to an adult program, such as the Philadelphia Adult Congenital Heart Center. Recently he wrote an essay for school which began "Thump, thump, thump" and went on to describe his wish to become a heart surgeon.
Of the days immediately after Justin's birth, Mr. Goucher says: "Those are some of the worst memories we have. But once you meet people at the Cardiac Center, you end up trusting them. We owe a lot to them."
"We felt comfortable there," Mrs. Goucher recalls. "We knew that we were in the right place, and there is comfort in that."
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