Patient and Family Stories
Watch the stories of compassionate care received by some of our Heart Center patients and families. For more about the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center, visit our website.
Ellie's Story | Expert Care for Ellie
Diagnosed with long qt syndrome (LQTS), Ellie Frankenfield has been monitored remotely by cardiac care experts at Johns Hopkins Children’s Center since she was six months old. After being told that a pacemaker would be needed, Ellie and her mother, Kimmie, traveled from their hometown in North Carolina to Johns Hopkins for a pacemaker procedure.
Zach's Story | Expert Multidisciplinary Teamwork
With a diagnosis of tetralogy of fallot (TOF), Zach McKinley had his first heart surgery as a one-year-old in China. After multiple surgeries by age 15, Zach’s cardiologist referred him to John Thomson at Johns Hopkins Children’s Center for a catheterization procedure.
Zeke's Story | The Heart of a Warrior
During her 22-week ultrasound appointment, Ashley Robinson’s doctors noticed something wasn’t right with her baby’s heart. Johns Hopkins pediatric cardiologist William Ravekes revealed that her son, Zeke, had hypoplastic left heart syndrome (HLHS), a condition in which the left side of the heart does not form correctly. Shortly after he was born, he had the first of his three surgeries at the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center at Johns Hopkins Children’s Center.
Navy's Story | Caring for the Littlest Heart Patients
Before Navy was born, doctors at Johns Hopkins Children’s Center diagnosed her with a rare congenital heart abnormality called tetralogy of Fallot with an absent pulmonary valve. Because Navy was so small at birth, pediatric cardiac surgeon Bret Mettler suggested waiting until she got bigger to have surgery to fix her heart defect. After a few months at home, Navy returned to Johns Hopkins in September 2020 to undergo open-heart surgery.
More of Our Stories
21-month-old Lemuel was referred to Johns Hopkins Children’s Center when his pediatrician detected a pathological murmur. An echocardiogram and cardiac catheterization revealed there was a blockage above his aortic valve, resulting in a diagnosis of supravalvular aortic stenosis. In the summer of 2020, Lemuel underwent successful open-heart surgery to repair his valve.
Born with transposition of the great arteries, 20-year-old Levi Silva required multiple surgeries over his lifetime. In summer 2020, Levi learned he would need to undergo his fourth open-heart surgery. After consulting multiple heart centers across the nation, Levi and his family felt that the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center was the best fit.
At 6 months old, Ruby was diagnosed with a heart murmur, and a visit with pediatric cardiologist Joel Brenner confirmed that she had a hole in her heart. As Ruby grew, the hole in her heart grew larger until at 4 years old, Dr. Brenner told her family that Ruby would need surgery within the year.
After 15-year-old Micah's chest pain was revealed to be an enlarged heart, surgeons placed a ventricular assist device to save his life — but ultimately Micah needed a transplant to prevent heart failure and return to being a normal, fun-loving teenager.
Born with hypoplastic right heart syndrome, Kamari had his first heart surgery when he was just 3 days old, and in the coming years, he would face more obstacles on the road to a heart transplant.
Michael Edenburn, 76, was two and a half years old when he underwent the operation that gave birth to modern cardiac surgery and has saved thousands of children’s lives since.