Posted on Feb 06,2017
Five days after Adam Verigan was born, the pediatrician heard a heart murmur. That familiar “lub-dub” sound of the heart, which is caused by the closing of the valves as the heart pumps blood through the body, was followed by an extra sound—a murmur. Heart murmurs are very common in newborns and most of the time, are nothing to worry about. In Adam’s case, however, there was something more.
At Adam’s six-month checkup, the heart murmur was still there. His parents, Nancy and Vernon, were brought to tears when the pediatrician told them that something was wrong with their baby’s heart. The pediatrician referred the family to Johns Hopkins All Children’s Heart Institute.
At Adam’s first visit to the hospital, the cardiologist diagnosed him with a congenital heart defect known as Tetralogy of Fallot (TOF). TOF changes the way the blood flows through the heart. Four specific heart problems make up TOF, including a hole in the wall separating the two lower chambers of the heart. These problems cause a lack of blood flow to the lungs. Low-oxygen blood then circulates through the rest of the body and body tissues.
To correct some of these problems related to TOF, Adam had his first open-heart surgery at 10 months old. Since TOF surgery had only been around for about five years, the cardiologists were hopeful that this repair was all that was needed. It was also difficult for the doctors to give Adam’s parents a clear outlook for his future. From that day forward, Adam would see a cardiologist once every six months.
Living with a congenital heart defect
Nancy and Vernon made sure Adam felt as normal as the other kids his age. Even the simplest acts of childhood were important, like running and playing on the playground. Although the doctors advised Adam to avoid contact sports, heavy weightlifting and too much caffeine, Nancy and Vernon made sure Adam felt he could still be a child. He played soccer, basketball and baseball.
“I never thought I was limited by my heart defect,” Adam says.
Even though he was able to live a normal life, the road ahead was still long. During recess in the sixth grade, Adam developed an atrial arrhythmia, an irregular beat in the heart’s upper chambers.
“My heart felt like it was going to come out of my chest,” Adam says.
His heart was beating more than 200 times a minute. He’d need an electrophysiology study to correct it and medication to control it.
At 16, he had his second open-heart surgery to replace his pulmonary valve, the valve that helps control the flow of blood from the heart to the lungs.
During his freshman year in college, the Johns Hopkins All Children’s cardiologists discovered Adam’s tricuspid valve was leaking. At 19, he had his third open-heart surgery to repair it.
At 28, Johns Hopkins All Children’s cardiologists treated Adam for endocarditis, a serious infection of the inner lining of the heart. He required daily IV antibiotic treatments and received many of them at Johns Hopkins All Children’s Main Campus Outpatient Care infusion lab.
When Adam was 32, Johns Hopkins All Children’s cardiologists inserted an implantable cardioverter defibrillator (ICD) in his chest—a small device that helps treat irregular heartbeats.
Today, at 35 years old, Adam lives a healthy and fulfilled life but still avoids high-adrenaline situations such as rollercoasters and mountain climbing. He’s also mindful of electromagnetic fields around his ICD, such as holding an iPad over his chest, standing near magnetic detectors in stores or airports and working too close to a car engine.
With future medical procedures ahead and a lifetime of monitoring required, Adam’s strong faith in Jesus, his family and top-notch medical care bring him comfort and peace.
“My heart defect has allowed me to live from an eternal perspective and value the important things in my life,” Adam says.
As an employee for over nine years, Adam works in the Johns Hopkins All Children’s Heart Institute, managing the cardiology, perinatology and OB/GYN medical imaging systems. He works alongside some of the same clinical staff who helped save his life as a patient, including Lisa Moore, one of his nurses while he was a patient.
“Adam is really the ultimate patient advocate because he has firsthand experience,” Moore says. “He has a gift, a unique gift.”
With his perspective as a patient and an employee, Adam frequently speaks to patients, families and even pregnant mothers to encourage them and give them hope after a congenital heart defect diagnosis.
“I understand what you are going through,” Adam says to patients and families experiencing a pediatric illness. “And you are in the right place to receive the care your child needs.”
Adam and his wife, Elizabeth, have four children, all with healthy hearts. Because one parent has a congenital heart defect, the children were at a higher likelihood of having one. With each pregnancy, Adam and Elizabeth have had fetal echocardiograms at Johns Hopkins All Children’s Hospital to check the baby’s heart. During the initial fetal echo for their youngest child, Jesse, a Johns Hopkins All Children’s cardiologist detected a hole in the lower chambers of their son’s tiny heart. However, during a follow-up fetal echo appointment, the cardiologist discovered that the hole had completely closed.
The continued care Adam has received not only for himself but also for his family brings him even closer to the Johns Hopkins All Children’s Heart Institute.
“I am grateful Johns Hopkins All Children’s Hospital is an option for me,” Adam says. “It’s a huge part of my life. I am thankful. For my heart beating in my chest, I am so thankful for that.”
You can almost hear it: lub-dub ... lub-dub.
Adam Verigan shares his story on Johns Hopkins All Children's US 103.5 FM Radiothon