Cardiologist Stacy Fisher has been caring for complex patients for more than 20 years. But it wasn’t until she joined the Johns Hopkins Medicine Heart and Vascular Institute last July that she felt part of a multidisciplinary team that provides extraordinarily personalized care for adult patients with unique anatomies. 

Soon after she joined Johns Hopkins as associate director of the Adult Congenital Heart Disease Center, Fisher presented the case of a patient for whom she had been trying to find a solution for many years. The patient had a lung removed at an early age, and the shape of the chest had changed over time to where it was putting pressure on the upper airway and esophagus. 

“I reached out to people at institutions around the world, but only when I got to Hopkins did we find a solution,” she says. “Through our multidisciplinary conference, I connected with congenital cardiac surgeon Danielle Gottlieb and then with surgeon Stephen Yang. Their ideas were better than any of the other ideas I’d heard. He operated, and absolutely changed this patient’s outcome for the better.” 

Another longtime patient had an unusual problem of collateral vessel formation that was stealing coronary blood and diverting it into the patient’s pulmonary artery. Using a 3D model created in her research lab of the patient’s unique anatomy, Fisher presented the patient’s case to the weekly multidisciplinary conference, which includes representatives from pediatric cardiology, pediatric and adult congenital heart surgery, interventional cardiology, radiology, adult congenital cardiology, residents, fellows and students.  

“Together, we decided we needed a unique implantable part that had to be specifically designed and engineered for this patient,” she says. “We had to get FDA approval, and to do that we had to prove that this part was absolutely necessary, not commercially available, and had a favorable risk profile without other reasonable alternatives for this patient. Our team worked with engineers to make the part, and it was implanted recently by Dr. John Thomson.  The problem is fixed now. These are the kinds of ‘only at Hopkins’ opportunities that brought me here.” 

The Growing Need for Adult Congenital Heart Disease Specialists 

In the 1960s, about 10% of patients with complex congenital heart disease survived to adulthood, says Fisher, noting that survivability of infants born with complex heart lesions today is around 90%. There are now more than 2 million adults in the United States living with congenital heart disease, but only 350 or so certified specialists to care for them. “It’s a growing niche of cardiology with complex needs, and we are excited to fill that need,” says Fisher, who specializes in adult congenital heart disease, pregnancy-related heart disease and congenital heart pulmonary hypertension. 

Depending on when a patient with congenital heart disease was born, and what anatomy that person was born with, they will have had variations of surgery and surgical outcomes. These patients may have completed growing, or they may still be growing. “We are trying to normalize their anatomy and life expectancy with emerging technologies,” says Fisher. “In order to do that, we need to partner with technologists, with teaching, research and engineering, with genetics and fetal care. This kind of care is only possible as a team. In my opinion, this is the ultimate in personalized cardiac care.” 

As the birthplace of modern pediatric cardiology, Johns Hopkins has pioneered many innovations, including those by luminaries such as surgeon Alfred Blalock, cardiologist Helen Taussig and scientist Vivien Thomas, who together developed a shunt to resolve tetralogy of Fallot. “Many of the Blalock-Taussig-Thomas patients are still in the area and alive because of interventions at Hopkins,” says Fisher. “Now it is our responsibility to take care of them as adults who are living longer and healthier lives.” 

Innovations in 3D Printing Make Cardiac Treatments Safer 

Many adult patients with unique anatomies have not had perfect outcomes. These patients now require innovation. That’s where the Johns Hopkins team comes in, says Fisher.  

“There is so much variation among these patients that you have to figure out their structures, which may be very different from someone else with the same condition,” says Fisher, who started using 3D printed models to help educate patients, families and the care team, and to guide and produce safer surgeries. With 3D printing, she says, the care team gets a better view of what is different or missing in the patient so there is then less discovery taking place during surgery. 

“If we can produce an actual-size 3D model and then see it, feel it or try the new technology in the model before we try it in the patient, then outcomes will be better and safer,” says Fisher. “We are now at a place where I think we can do a better job for these patients than what’s available out of the box. I think we really have a special opportunity to make a difference.”