Heart Awareness Month: Erin’s adult congenital heart disease journey and how she found a definitive diagnosis 30 years later when she came to Children’s Hospital

As a child growing up in Akron, Ohio, Erin Serrano never thought about becoming a nurse when she was asked the question that kids are often asked, “What do you want to be when you grow up?” But the thought of nursing began to interest her more as she got older. Since her mother was a nurse, Erin felt it was natural for her to pursue what would become a rewarding career. She decided to follow in her mother’s footsteps.

“I guess it was in my blood,” said Erin. “After graduating from nursing school, I began my career as a general care nurse then pursued travel nursing. While traveling, I discovered my interest in in the cardiac intensive care unit. At the time, I was working at Children’s Hospital of Philadelphia where they had recently opened a brand new cardiac intensive care unit (CICU) and I was staffing a unit that housed overflow beds there. After traveling for over a year, I accepted a position in the CICU at Duke University Hospital. I stayed for 13 years before moving to Louisiana.”

Just like many of the patients she cared for in the CICU, Erin shared a special bond with them – she had a congenital heart defect, too. As a nurse, she found it very rewarding being able to connect with her patients and their families on such a personal level and she was grateful for the opportunities she had to play a supportive role in their lives.

“I loved working with CICU patients,” said Erin. “I am not one to define myself by my heart defect, but when opportunities arose, I shared my personal heart journey and experiences to give hope to patients and their families. After being a bedside nurse for 13 years, I wanted to pursue a leadership role. When I found the clinical leader position in the Cardiology Clinic at Children’s Hospital New Orleans, I knew it was the perfect fit.

Erin began as a clinical leader in the Heart Center at Children’s Hospital New Orleans in January 2020 before transitioning to her current role as Heart Center Ambulatory Manager. As an adult with CHD, she became a patient of Dr. Michael Brumund, the Medical Director of Adult Congenital Cardiology at Children’s Hospital. It wasn’t until she saw him that she realized her congenital heart condition had been misdiagnosed for more than 30 years.

“My heart defect was undiagnosed in utero,” said Erin. “The OB nurse noticed I became cyanotic prior to discharge. An echocardiogram was performed, and I was diagnosed with pulmonary atresia, a form of heart disease in which the pulmonary valve - the opening that regulates blood flow from the right ventricle to the pulmonary artery– does not form. Because of this, blood flow to my lungs was obstructed, causing cyanosis.

Since Erin had a congenital heart condition that affected blood flow to the lungs, she was transferred from her birth hospital in Akron to Rainbow Babies and Children’s Hospital in Cleveland. When she was 3 days old, her doctors implanted a Blalock-Taussig (BT) shunt, a small tube, only a few millimeters wide, that is used to create a pathway for blood to reach the lungs, the connection is made between the first artery that branches off the aorta (right subclavian artery) and the right pulmonary artery. The shunt is only a temporary fix to help improve blood flow to the lungs. It does not correct the defect, but it helps to resolve symptoms until a child is older and/or the defect can be surgically repaired.

“The BT shunt allowed blood to flow from my heart to my lungs,” said Erin. “As patients grow, the shunt is typically replaced with a larger conduit. In my case, when I was 5 years old, they removed the shunt and my medical record indicated they placed a conduit. I thought I would eventually need to get it replaced down the road.”

From elementary until her early teenage years, Erin did not experience any major heart complications other than a few palpitations here and there. She was an avid swimmer and did pretty much everything a normal child or teen her age would do. But when she reached her late teens – around 18 or 19 years old – she started developing frequent and more severe palpitations. She had several tests including a stress test and wore a Holter monitor, a small device that keeps track and records heartbeats. The information on the Holter monitor helped her doctors determine if she had a heart rhythm problem.

After a series of tests, Erin was diagnosed with ventricular tachycardia, or V-tach, a heart rhythm disorder caused by abnormal electrical signals in the lower chambers of the heart. The condition can last for a few seconds or much longer, and sometimes can be fatal. A healthy heart beats about 60 to 100 times a minute at rest. In patients with V-tach, the heart beats much faster, like 100 or more beats a minute.

“Due to my previous surgeries – shunt placement and shunt removal – scar tissue was contributing to the electrical issues with my heart,” said Erin. “Because of where the scar tissue was located, it was unable to be ablated. In my early 20s, my cardiologist implanted an internal cardiac defibrillator (ICD), to monitor for V-tach. The original ICD was placed by my cardiologist in Ohio. Since then, I’ve needed two generator replacements. The most recent was April 2020 with Dr. Gajewski at Children’s Hospital New Orleans.”

Throughout Erin’s life, she was followed regularly by her cardiologists in Ohio. When Erin was 15 years old, her pediatric cardiologist told her it was time to start transitioning her care to an adult provider. When she turned 18, she began seeing a doctor who was board-certified in adult congenital heart disease. When she came to Children’s Hospital New Orleans, she began seeing Dr. Brumund, who would make a profound impact in her life.

When Erin transitioned her care over to Dr. Brumund, he and Lauren King, NP with the Adult Congenital Heart Disease (ACHD) Program, reviewed Erin’s lengthy medical history closely and came across something unusual.

“I was in my 30’s when I started seeing Dr. Brumund. After reviewing my medical history, he was certain I did not have a conduit despite my previous medical records. After further review of my medical history and echocardiogram images, he diagnosed me with pulmonary stenosis, the narrowing of the pulmonary artery which impacts blood flow to the lungs. I was relieved to finally have a correct diagnosis at the age of 37.”

As a patient and employee at the Heart Center, Erin is appreciative to know Children’s Hospital has an adult congenital heart program where she and other congenital heart disease survivors can see world renowned experts for their follow-up adult care. Erin sees Dr. Brumund on an annual basis for follow up CHD and ICD management. She now has all her care in one place.

As for her patient experience, Erin can’t say enough wonderful things about the Heart Center staff, including Dr. Brumund. Together everyone made her feel comfortable.

“I always have a fantastic experience with the staff,” said Erin. “I feel extremely lucky to have met Dr. Brumund and Lauren and attribute my correct diagnosis to the thorough and exceptional care they have provided. During my first appointment with Dr. Brumund, he hand-drew a heart diagram displaying my new diagnosis and took time to explain and answer questions. I am so thankful for Dr. Brumund and as a bonus I have the pleasure of working with him every day in the Ambulatory Department. I truly feel I hit the jackpot by getting to be a part of the Children’s Hospital family.”

Click here for more information about the Adult Congenital Heart Services at Children’s Hospital New Orleans.