Earlier this week, TV host Jimmy Kimmel announced to viewers the arrival of his newborn son, Billy. What would normally have been a happy announcement from a proud father — complete with an adorable photo or two — has now become an emotional, heart-wrenching story being followed around the world.
The day of Billy’s birth quickly changed from one of excitement into one of uncertainty when an astute medical team noted that his blood oxygen levels were low. The cause, they would soon learn, was a form of congenital heart disease known as tetralogy of Fallot with pulmonary atresia.
I write about congenital heart disease as a pediatric cardiologist, but it just so happens that Billy is my baby cousin. He is the newest member of our family, but this diagnosis instantly made him one of the newest members of another, much larger family — that of the congenital heart disease community. And Jimmy’s courage in coming forward with the details of this agonizing journey, in a very public way, might have unwittingly and profoundly affected the way the world looks at children with heart defects.
Congenital heart disease is the most common type of birth defect, affecting just under 1 percent of all newborns. The diagnosis is typically made by an echocardiogram, which can identify congenital valve abnormalities, holes in the walls within the heart, narrowing of the large arteries in the chest, and other problems. Some defects resolve spontaneously, and some simply require lifelong follow-up without intervention. Others are more severe and life-threatening, requiring multiple open heart surgeries during childhood and beyond.
Certain congenital diseases, like tetralogy of Fallot, are combinations of a few different abnormalities. The most important components of tetralogy of Fallot are a large hole in the wall between the ventricles, and varying degrees of blockage of the pulmonary valve. Open heart surgery is performed in infancy. Although multiple surgeries are often required, including the eventual placement of an artificial pulmonary valve, the prognosis of a patient with tetralogy of Fallot is typically excellent.
Despite its high prevalence, congenital heart disease is a relatively underfunded area of pediatrics. Advancements in pediatric cardiology and cardiac surgery have allowed us to offer long and meaningful lives to children with heart conditions. But we still have a long way to go.
What does the future hold for my patients with the condition? I am hopeful that they will someday be able to avoid additional surgeries, by instead undergoing less invasive catheter procedures. I hope that new medications will be developed to more safely and effectively treat pediatric heart failure. Most of all, with further advancements in our understanding of the causes of congenital heart disease, I hope that some will be able to be prevented.
The pediatric cardiology community has rallied behind my family, and has welcomed the new light shed on the condition. And most important, patients and families affected by congenital heart disease now have a new advocate in Jimmy Kimmel.
Denise A. Hayes is a pediatric cardiologist at the Children’s Heart Center at Cohen Children’s Medical Center, a member of Northwell Health.