Living with Congenital Heart Block: Sydney Taylor’s Heart Warrior Journey
Sydney Taylor was born with congenital complete heart block—the most severe form of heart block—and has relied on pacemaker technology since she was just 15 hours old. Today, she shares her journey as a heart warrior navigating the challenges of childhood and adult congenital heart disease (ACHD) care.
What It Means to Live With a Pacemaker and CHD
Whenever people ask me what it’s like to have a pacemaker, I never know quite how to answer. I don’t know life without one. Having been born with congenital complete heart block, I’ve depended on pacemaker technology my entire life.
Growing up, I faced very few complications and honestly believed I was a normal, healthy kid who just happened to have a pacemaker. But as I got older and became a nurse, I began piecing together my congenital heart disease (CHD) lived experience—and realizing how much had been overlooked.
Growing Up with Congenital Heart Block: Childhood Challenges
Like many “heart kids,” I grew up with routine cardiology appointments, X-rays, and echocardiograms. I had pacemaker surgeries at ages four and eight, always careful to avoid anything that could damage my device.
By age five, I began struggling with my weight, which quickly became the focus of my cardiology visits. When I experienced dizziness, chest pain, and palpitations in middle school, my symptoms were dismissed as “anxiety” or “attention-seeking,” blamed on my weight rather than investigated further.
Years later, after countless “normal” test results and persistent symptoms, I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS). The diagnosis came not from my pediatric cardiology team—but from Johns Hopkins, marking a turning point in my care and understanding of my body.
Facing New Complications in Adult Congenital Heart Disease Care
After my pacemaker replacement in 2017, I expected to continue with “routine” follow-ups. But in 2019, I developed extensive deep vein thrombosis (DVT)—likely from scarring caused by the temporary pacemaker placed at birth. No one had ever warned my family or me about this lifelong risk.
This began years of new challenges: compression stockings, blood thinners, venoplasties, and stents. At the same time, I transitioned into adult electrophysiology care. Like many adults living with congenital heart block, I quickly discovered how unprepared the healthcare system is to manage long-term complications of pacemaker dependency.
Shut Out of ACHD Clinics: The Gaps in Adult CHD Care
When I began experiencing worsening shortness of breath and dizziness, I tried to access an Adult Congenital Heart Disease (ACHD) clinic. Instead, I was told my defect “wasn’t structural” and therefore didn’t qualify. Another center gave me the same answer.
This exclusion—denying congenital heart block patients access to ACHD specialists—is dangerous. Adults like me live with lifelong, complex risks, including pacing-induced cardiomyopathy, valve issues, and vein occlusion. To be dismissed because my condition isn’t considered “structural” is both isolating and unsafe.
Why Sharing Heart Warrior Stories Matters for CHD Awareness
As a public health nurse, I believe expectations and standards of care for congenital heart block must evolve. Surviving does not automatically mean thriving. Adults with congenital heart disease deserve lifelong, specialized care that acknowledges our unique risks and lived experiences.
By sharing my heart warrior story, I hope to reach others who feel unseen or unheard. If you’re living with congenital heart block or another form of adult congenital heart disease, know that your story matters. Together, by raising our voices, we can create change.
Take Action: Support Adults Living with Congenital Heart Disease
If you or someone you love is navigating adult congenital heart disease (ACHD):
- Explore OHHF’s Adult CHD Resources
- Connect with the Adult Congenital Heart Association (ACHA)
- Share your own heart warrior story — because every voice strengthens our community and helps others feel less alone.



