September 19, 2023
By Jana McClymonds, 16, patient
Diagnosed with hypoplastic left heart syndrome (HLHS) as an infant, I've never known a life without this complex single ventricle heart condition. HLHS was discovered shortly after my birth, despite numerous ultrasounds during my mom's pregnancy. I was immediately life-flighted to a children's hospital in California who could perform the life-saving Norwood procedure when I was just five days old.
My parents were understandably terrified and uncertain, as they knew little about children's hospitals or heart conditions. Information about HLHS was scarce at the time, leaving them feeling isolated as we embarked on this challenging journey.
Following my first surgery, we spent 30 anxious days in the hospital. Then, at two months old, I underwent my second heart surgery, the bidirectional Glenn procedure. When I was five months old, we relocated from California to Texas. At seven months old, our local pediatric cardiologist delivered distressing news stating that I urgently needed a catheterization procedure to survive. My parents were understandably panicked and reached out to the cardiothoracic heart surgeon in California who had performed my previous surgeries. He assured them that everything was under control and recommended a specialized children's hospital in Texas for my care.
This is where we first met Dr. Alan Nugent, a remarkable doctor with extensive experience from Australia's Royal Children's Hospital and renowned institutions like Boston Children's Hospital and Harvard Medical School. Dr. Nugent was not only a pediatric cardiologist but also an interventional cardiac catheterization doctor who had conducted extensive research on congenital heart defects. From that moment, he became an integral part of our lives.
At the age of eight months, we had our first appointment with Dr. Nugent at Texas Children's Hospital in Houston. He quickly understood my parents' concerns and thoroughly reviewed my medical history. Dr. Nugent confirmed that we were indeed in the right place for my care. He explained the intricacies of my heart condition and drew diagrams to help us understand. He provided invaluable insights into blood flow and advised us on monitoring my pressures and oxygen saturation levels. Most importantly, he encouraged my parents to let me be a child and enjoy playtime without undue restrictions. Throughout our office visit, he patiently answered my parents' questions, offered expectations for the future, and guided us on what to watch out for. He made the decision to take me off unnecessary medications, leaving me on an aspirin regimen. He recommended regular check-ups every six months to a year, explaining the significance of each test performed. Leaving the clinic, my parents felt a newfound sense of security and relief. We were grateful to have found a doctor who genuinely cared about my well-being and who equipped us with the knowledge and support needed for ongoing care.
Dr. Nugent even had a unique way of pronouncing my name, "shJana," which I found amusing, but it meant a lot to my parents.
The bond between a patient and their doctor is special, and our connection with Dr. Nugent has been exceptional. Because my heart condition required ongoing care, we willingly followed Dr. Nugent as his career led him to UT Southwestern, Children’s Medical Center of Dallas, believing it was in my best interest. For the next decade, we traveled to Dallas solely for my check-ups. Each time, Dr. Nugent greeted me with open arms and a warm hug. My parents recall that whenever they told me we were going to see Dr. Nugent, my face lit up with excitement, and I eagerly prepared cheese fishes and cheerios for the three-hour car ride. I couldn't wait to see Dr. Nugent, and even though I could barely pronounce his name, my parents knew that I recognized him. During each visit, if I spotted Dr. Nugent in the hallways before my appointment, I would run up to him, giving him a big hug and exchanging high fives. He made me feel safe and happy, even in the intimidating hospital setting. He had a unique talent for explaining things in a way that even a young child like me could understand. Dr. Nugent always made an effort to speak directly to me, asking me questions to which I would nod or shake my head in response. During our visits, he would inflate purple gloves and draw faces on them to keep me entertained.
When I was two and a half, I underwent my third open-heart surgery, the Fontan procedure. It was a significant event, but Dr. Nugent was there, supporting me and my parents throughout the process. I recovered quickly, and my parents remember how I couldn't wait to get out of bed and ride a little scooting car around the hospital floor. My family members had their hands full keeping up with my boundless energy. Dr. Nugent even mentioned that my recovery was the fastest he had ever seen. About a year later, Dr. Nugent performed the fenestration procedure as a follow-up to the Fontan.
When I turned 12, Dr. Nugent moved to Ann & Robert H. Lurie Children's Hospital in Chicago. My parents and I decided to follow him there, knowing that he was the best person to continue overseeing my care. During my yearly checkups, Dr. Nugent would open the door and welcome us with open arms, saying, "Well, well, who do we have here?" We would rush to him with big hugs and tears of joy. Even during the pandemic, we had virtual visits, but nothing compared to seeing him in person. Post-pandemic, as restrictions eased, we continued having routine checkups locally in Texas but also kept up with video visits to ensure he stayed informed.
This year, we traveled to Lurie Children's in Chicago for regular checkups and a routine catheterization procedure. At Lurie Children's, Dr. Nugent introduced us to my new, comprehensive single ventricle team consisting of Dr. Kiona Allen and APP Michelle Steltzer. This team is incredibly important to me in many, many ways.
During my recent catheterization procedure, I had the opportunity to meet Dr. Nugent's catheterization lab team. They were exceptionally kind and supportive throughout the process. After the procedure, while I was still groggy from the medication, I remember Dr. Nugent coming in to check on me. He leaned in quietly, placed his hand on my arm, and reassured me that everything looked good. I couldn't help but cry. It wasn't just a doctor checking on me; it was someone filled with genuine happiness, warmth, trust, and care – it was Dr. Nugent.
Dr. Nugent has been an extraordinary doctor, and my parents and I couldn't have asked for more. Because of him, I am inspired to give back, volunteer, advocate for congenital heart disease patients, organize fundraisers for the heart clinic and catheterization lab, and dedicate time to listening to parents and patients while working closely with medical teams. My next step is college, where I plan to focus on biology. Beyond that, I aim to attend medical school, pursuing my dream of becoming a pediatric cardiologist just like Dr. Nugent. My focus will be on congenital heart defects through ongoing research and care.
And that unique way he pronounces my name, "shJana," has stuck with me since I was a little girl. It's our special connection, and I'll cherish it forever. Dr. Nugent has been like a friend to my family and me, a guardian angel, and a mentor. We can't imagine our lives without him. Today, as I approach 17 years old, Dr. Nugent holds a special place in my heart, and I am profoundly grateful to have him in my life and on my HLHS journey.
More about Lurie Children’s Heart Center
Under the leadership of Dr. Alan Nugent, Section Head of Interventional Cardiac Catheterization, Lurie Children’s catheterization lab has grown exponentially in volume and complexity of cases. As a subspeciality of cardiology, the Interventional Cardiac Catheterization team utilizes catheters in the management and treatment of congenital heart disease. State-of-the-art catheterization procedures include angioplasty, endomyocardial biopsies, diagnostic catheterizations, percutaneous pulmonary valve insertions, transcatheter device placements, as well as septal defect closures.
The Single Ventricle Center of Excellence cares for patients before birth through adulthood and offers longitudinal comprehensive treatment for patients diagnosed with single ventricle heart defects.The team supports patients with specialized treatment,evaluation and lifelong follow-up care in an environment that supports the whole family. The Single Ventricle team is dedicated to improving patient surgical, medical, neurodevelopmental, and psychosocial outcomes so that patients can lead meaningful and active lives.
