The Lifetime Management of Congenital Heart Valve Disease

Families with children living with congenital heart valve disease quickly learn about the commitment it takes for lifelong management. Additionally, as those children grow and enter adulthood, they understand that although heart valve disease may not hinder them from living a normal life, it hasn’t disappeared and could need further intervention sometime in the future. Having the guidance of an experienced medical team from the time of initial diagnosis is the key to successful lifetime management.

To help families learn more about successfully managing congenital heart valve disease, we spoke with Dr. Stephen Nageotte, a leading interventional cardiologist at the Guerin Family Congenital Heart Program at Cedars-Sinai Medical Center in Los Angeles, California.

Video available online at:

https://www.youtube.com/watch?v=NwPICNddc4w

Key Facts About Managing Congenital Heart Valve Disease Over a Lifetime

 Here are the key insights shared by Dr. Nageotte:

• Choosing the right heart team is integral to proper guidance over time. “I think one of the things to consider is just how complex these lesions are,” said Dr. Nageotte. “When we’re talking about congenital heart disease, there’s incredible variability in terms of disease progression and when the disease presents, whether it be in utero or later in life.”  Dr. Nageotte explained that one of the most important things patients and their families can do is have a heart team that they feel comfortable with, so they understand what is next as they progress through treatment.

• Who is part of the multidisciplinary heart team? “Within pediatric cardiology, there is not just the pediatric cardiologist,” Dr. Nageotte said. “There are fetal cardiologists, interventional cardiologists, and imaging specialists. Apart from that, we have congenital cardiothoracic surgeons and congenital anesthesia. We also have a Pediatric Intensive Care Unit (PICU) team of intensivists and the nursing staff, which is incredible. We include the families in the team as well.”

• Once patients and their families find an excellent multidisciplinary heart team, what comes next? Dr. Nageotte explained that the initial decision about the best strategy for the first surgery or transcatheter intervention is extremely important for long-term management. “With these valves, there will inevitably be deterioration, and patients will most likely need to have more than one intervention.”  He said that, rather than thinking about the easiest way out of the initial situation, they will need to make decisions that lead to a lifetime of success.

• While developing a management and intervention plan, what should patients know about yearly surveillance? “It is absolutely not a one-and-done deal where we put the valve in, say goodbye, and that’s it,” said Dr. Nageotte. “Patients will need to follow up with us, at least yearly, to keep an eye on the valve with echocardiograms. We also conduct more advanced studies, including MRI, exercise testing, and others, to evaluate the electrical system of the heart to decide if and when a patient needs a repeat intervention or valve replacement.”

Thanks Dr. Nageotte and Cedars-Sinai Medical Center!

On behalf of all the patients in our community, thank you, Dr. Stephen Nageotte, for everything you and your team are doing at the Guerin Family Congenital Heart Program at Cedars-Sinai Medical Center in Los Angeles, California!

Related links:

• See Dr. Stephen Nageotte’s Interactive Surgeon Profile

• Patient Webinar: The Lifetime Management of Congenital Pulmonary Valve Disease

• Free Ebook: The Lifetime Management of Congenital Pulmonary Disease

Keep on tickin,
Adam

P.S. For the deaf and hard-of-hearing members of our patient community, we have provided a written transcript of our interview with Dr. Nageotte below.