Adult Congenital Heart Disease Care
Growing up with a heart condition means you need care that grows with you. University of Iowa Health Care Stead Family Children’s Hospital’s Adult Congenital Heart Disease (ACHD) Program provides lifelong, specialized care for people born with congenital heart disease.
As the only ACHD program in Iowa accredited by the Adult Congenital Heart Association in Iowa, we offer comprehensive, personalized care all under one roof. Our goal is to help you live a healthy, full life with the same team you trust from childhood through adulthood.
Seamless transition from pediatric to adult care
When you turn 18, your heart condition doesn’t disappear — and neither does our support. We begin transition planning as early as age 16 to help you feel confident and ready to take charge of your health. And because our records, testing, and providers stay within our ACHD program, the transition to adult care is seamless. We guide you through each step, promoting independence along the way.
Expert, multidisciplinary care for every stage of life
Adults with congenital heart disease face unique challenges, from heart‑rhythm concerns and valve replacements to pregnancy planning and managing heart failure. Our ACHD program brings together cardiologists, nurse practitioners, imaging specialists, and surgeons who understand the complex anatomy and lifelong history of congenital heart conditions.
Our multidisciplinary team is here for every chapter of your life. As part of a larger health system, we seamlessly coordinate with the additional specialists you may need — including high‑risk obstetricians for pregnancy support, electrophysiology for rhythm management, genetics for family screening, and advanced heart failure and transplant programs when necessary.
Our approach to adult congenital heart disease care
Each visit starts with a thorough evaluation by our ACHD-certified cardiologists who specialize in the unique structure and function of adult congenital hearts.
They’ll work with you to design a treatment plan that fits your needs, your family’s goals, and your everyday life. That means clear communication, shared decision‑making, and support that continues long after each visit. This may include:
- Advanced imaging (3-D echocardiography, CT, and MRI) to assess their heart’s anatomy
- Cardiac catheterization or valve procedures to repair or replace heart structures without open surgery
- Rhythm management, including ablation, pacemaker, and ICD care
- Heart failure and transplant evaluation when needed
- Pregnancy and family-planning consultations with our high-risk OB team
Our team also provides guidance for travel, college, employment, and insurance, so you can manage your heart care with confidence wherever life takes you.
Fetal echocardiography
A fetal echocardiogram (or fetal echo) is a specialized ultrasound that allows doctors to see your baby’s heart while still in the womb. Our pediatric cardiologists and imaging experts use fetal echocardiography to look closely at how your baby’s heart is developing and how blood flows through it in real time. This test is typically performed between 18 and 24 weeks of pregnancy, though it can be done later if needed. Fetal echo is safe, noninvasive, and helps identify congenital heart defects or rhythm concerns early. It gives your care team time to plan for the safest delivery and care after birth.
When a condition is found, our fetal cardiology team works closely with maternal-fetal medicine specialists, neonatologists, and cardiac surgeons to coordinate your baby’s care from diagnosis through birth and beyond.
Maternal care (OB/MFM collaboration)
Pregnancy can put extra stress on the heart, especially for women with congenital heart disease. That’s why our ACHD program partners closely with maternal-fetal medicine (MFM) specialists who have expertise in high-risk pregnancies. Together, we monitor your heart and your baby’s development throughout pregnancy, labor, and delivery.
From pre‑pregnancy counseling through postpartum recovery, we’ll help you make informed decisions and support both you and your baby with expert, compassionate care.
Living with an adult congenital heart disease
Living with congenital heart disease doesn’t mean limiting your life. It means learning how to thrive with the right care and support. We’ll talk with you about safe exercise, pregnancy planning, stress management, and long-term goals like career and travel. We’ll also connect you with resources like Heart Friends, our peer-support community, and specialists in mental health and rehabilitation who understand the ACHD journey.
Adult Congenital Heart Disease Program tests and treatments
- Echocardiogram
- Cardiac MRI and CT
- Cardiac catheterization
- Transcatheter valve replacement
- Ablation therapy
- Pacemaker
- Implantable cardioverter defibrillator (ICD)
- Ventricular assist device (VAD) implantation
- Pregnancy and reproductive counseling
- Genetic testing and counseling
Adult Congenital Heart Disease Program conditions treated
- Aortopathy
- Marfan syndrome
- Loeys-Dietz syndrome
- Turner syndrome
- Fontan circulation
- Pulmonary valve stenosis (PS)
- Atrial septal defect (ASD)
- Atrioventricular septal defect (AV canal defect)
- Coarctation of the aorta
- Cyanotic heart disease (category)
- Ebstein anomaly
- Hypoplastic left heart syndrome (HLHS)
- Interrupted aortic arch (IAA)
- Partial anomalous pulmonary venous return (PAPVR)
- Patent ductus arteriosus (PDA)
- Pulmonary atresia (PA)
- Single ventricle anomalies
- Tetralogy of Fallot
- Total anomalous pulmonary venous return (TAPVR)
- Transposition of the great arteries (TGA)
- Tricuspid atresia
- Truncus arteriosus
- Ventricular septal defect (VSD)
Our Care Team
UI Health Care’s Adult Congenital Heart Disease Program offers lifelong, comprehensive care for adult congenital heart disease.
Need help finding an adult congenital heart disease specialist?
- Sue Crimmins, RN, BSN
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