Advancements in congenital heart disease care are leading to longer lives, better outcomes
Congenital heart disease is a term for a wide range of heart defects or abnormalities that are present at birth.
In some cases, the defect is severe and life threatening. It may prevent the heart from working effectively and could require complex medical care – even open-heart surgery – to correct. In other cases, the defect may go undiscovered for years. It may not significantly affect a person’s quality of life until the person is a teenager, in midlife, or even older.
“One in 100 people have some form of congenital heart disease, which means it is present at birth, even though it may not be diagnosed until much later,” said M Health Fairview Pediatric Cardiologist Jamie Lohr, MD, a congenital heart disease specialist.
Fortunately, advances in surgical and non-surgical care for congenital heart conditions are allowing children and adults with congenital heart disease to live longer, healthier lives. We asked Lohr and her colleagues at M Health Fairview Heart Care to tell us more about how we’re translating these discoveries into leading-edge patient care.
Congenital heart disease is no longer just a pediatric condition.
In the past, congenital heart disease often meant a shorter lifespan. That trend has changed thanks in part to the pioneering work of University of Minnesota innovators. In 1952, University of Minnesota surgeon C. Walton Lillehei, MD, MS, PhD, performed the world’s first successful open-heart surgery.
M Health Fairview continues to bring leading-edge research to our patients today. As people with congenital heart disease live longer, we’re discovering new ways to improve quality of life at all ages.
“Even if we catch a congenital heart defect in childhood and successfully repair it, congenital heart disease is a condition that’s never really ‘cured’ in the traditional sense,” said M Health Fairview Cardiologist Kimara March, MD.
“We try to help young adults with congenital heart disease understand that their condition needs lifelong management,” she added. “Ideally, they should receive regular care from a cardiologist who specializes in congenital heart disease throughout their lives.”
M Health Fairview is home to three such experts: Lohr, March, and Cardiologist Cindy Martin, MD. All three are board-certified adult congenital heart disease specialists.
We offer expertise in non-surgical treatment options.
Advances in three-dimensional imaging allow doctors to get a detailed look at the heart. If some form of physical intervention is necessary – for example, replacing a valve or patching a hole – they can use these images to decide which method will be best given that person’s unique anatomy. Increasingly, the best option isn’t always surgery.
M Health Fairview teams are experts in various non-surgical treatments, including device closure of intracardiac defects, balloon dilation and stenting of blood vessels, and transcatheter valve replacements. We offer transcatheter pulmonary valve replacements using state-of-the-art, FDA-approved heart valves.
In addition, M Health Fairview recently celebrated its 1,000th transcatheter aortic valve replacement (TAVR). This method is an innovative alternative to open-heart surgery and can be used in other types of valve replacement as well. The new valve is inserted via a catheter in the groin. Patients are mildly sedated instead of receiving general anesthesia, and typically only stay one night in the hospital.
“Our team has expertise in various methods of valve replacement,” said Martin. “Even if a patient isn’t a candidate for transcatheter valve replacement, we can usually offer them a hybrid approach that still limits the surgical part of the procedure. This requires a team dedicated to congenital heart disease.”
M Health Fairview experts are also conducting research on molecular and cell-based therapies that could prevent cardiac damage or heal hearts with fewer surgical procedures.
“Now that we have the ability to examine the effects of congenital heart disease at the molecular level, we are developing new treatments that target those changes,” said Lohr.
We specialize in supporting patients throughout the lifespan – including during pregnancy.
M Health Fairview has developed a comprehensive care program that begins when a patient is a teenager and continues as they transition into independence. As a pediatric cardiologist, Lohr often follows her young patients into adulthood – even caring for them as they have their own children.
A mother’s congenital heart defects can affect both the mother and baby during pregnancy. They can also impact the mother’s healthcare needs for up to a year after delivery. Our team works with families before, during, and after pregnancy to provide the best possible outcomes for both parent and child.
“We’ve expanded our pregnancy care services as more people with congenital heart defects live to adulthood and have children of their own,” said Martin. “We provide pre-conception counseling at our adult congenital heart care clinic. We partner with OB/GYN and maternal-fetal medicine physicians to help our patients make decisions about becoming pregnant and managing pregnancy.”
If a person doesn’t want to become pregnant, or if it’s not a possibility because of their heart condition, our specialists can also work with them to find the contraceptive method that’s right for them.
We’re able to assist in complex cases, including heart transplant.
Our expertise spans the full spectrum of care. This includes complex care, surgical management and – in some cases – a heart transplant.
Our team brings together specialists from pediatric cardiology, adult cardiology, cardiovascular surgery, cardiac imaging, and pediatric and adult electrophysiology. They are supported by nurses with expertise in congenital heart disease, dedicated cardiac catheterization lab teams, and many other subspecialists experienced in the care of patients with congenital heart disease.
“Another unique thing about our team is that I’m board-certified in heart failure transplant,” said Martin. “If one of our patients needs a heart transplant, we have that expertise within our group, and we have that relationship established.
“We’re also able to offer some of the newer heart failure medications to our patients much earlier because of our expertise in that area,” she added.
The field is also evolving in the direction of mechanical device support that helps survivors as they age. M Health Fairview experts are leading the way in this area of research, particularly with ventricular assist devices (VAD). These devices help a person’s heart work better, improving quality of life or serving as a bridge to a heart transplant.
