Thousands Of Survivors Of Congenital Heart Defects Facing Specialist Shortage

Born with a serious congenital heart defect that requires regular medical check ups, Vanessa Mukite wasn’t prepared for the dilemma she faced when she entered adulthood. Like thousands of other adult congenital heart defect patients in the Chicago area, Vanessa had to deal with being handed off by her heart specialist.

“I went to see my pediatric cardiologist and the nurse told me, ‘Well, you’re over 18. You really can’t see him. You have to see an adult cardiologist,'” said Mukite, now 21 years old and a resident of Schaumburg. “I was upset because I knew that adult cardiologists that deal with my type of defect don’t have a lot of experience with my pediatric condition.”

As the baby-boom generation ages, an increasing number of congenital heart defect patients such as Mukite, who was born with a condition in which her heart was missing a ventricle, are finding themselves with the same difficulty. They’re discovering that with more than 30 different types of identified congenital heart disease, it can be very difficult for adult patients to find cardiologists who are experienced with these types of problems.

“The population of adults with congenital heart defect is growing rapidly every year,” said Dr. Khaled A. Dajani, assistant professor, division of medicine, cardiology, Loyola University Chicago Stritch School of Medicine, Maywood. “We’re at a point where the pediatric population with congenital heart defects is staying steady and the adult population is increasing. There are now more adults with congenital heart defects than there are kids with them.”

“Once these children born with congenital heart defects begin to enter adulthood, they often start to have increasing limitations, heart rhythm problems and other issues that require very specialized attention,” Dajani said. “Unless they get close follow-up care, typically from age 18, probably up to their 30s and 40s, they may fall through the cracks and get into serious trouble until they suffer irreversible heart disease.”

To help fill those cracks, Dajani and Dr. Peter Varga, director, division of pediatric cardiology; have teamed up with other pediatric and adult cardiologists at Loyola to form a highly specialized, multidisciplinary clinic dedicated to treating all of the needs of adult congenital heart defects patients.

“The complications and range of issues in adults with congenital heart disease can be very difficult to manage and may require special expertise,” Varga said. “A physician really needs to be focused and concentrated in this area in order to provide quality care to these people who are really underserved. That’s why we started this clinic.”

The clinic includes physicians who are experts in echocardiography, interventional cardiac catheterization, interventional cardiac electrophysiology, pulmonary hypertension and complex congenital heart surgery. Additional experts in high-risk pregnancies, genetics, fetal echocardiography, gastrointestinal and liver disease, pulmonary and hematology are also available to patients.

“One of the goals of this clinic is to give close and early follow-up care and intervention as needed,” Dajani said. “The bottom line is that there are thousands of people out there with this who may or may not be getting adequate care. But more importantly, they don’t know they’re not getting it.”

Due to advances in cardiac surgery, there about 1 million adults in the United States who have survived congenital heart defects, according to the Adult Congenital Heart Association, a not-for-profit organization dedicated to improving the lives of adults with congenital heart defects. Many of those adults would not have previously survived childhood. However, as this population began to age, adult cardiologist began to notice a steady increase in complications related to the initial defects (arrhythmias, heart-valve disorder, heart failure) that they had very little experience in treating.

“The simple fact is that there are more than a million adults in the U.S. who have congenital heart disease who may be getting inadequate or suboptimal care. That’s not just a Chicago problem, it’s a nationwide problem,” Varga said.

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