Living Well With a Fontan Heart: A Family Guide
-
Why Ongoing Care Matters
The Fontan operation helps blood flow to the lungs without a pumping chamber. Over the years, this special circulation can place extra stress on the heart, liver, and other organs. Regular check-ups help catch problems early – often before symptoms appear.
-
What to Expect at Routine Visits
- Heart Health: Echocardiogram, ECG or Holter monitor, Cardiac MRI
- Exercise & Activity: Exercise testing, guidance on safe sports
- Blood Tests: Liver function, kidney function, nutrition and protein levels, blood counts and clotting tests
- Liver Health: Liver ultrasound or elastography, blood tests for inflammation or scarring
- Development & Emotional Well-Being: Learning, attention, school support, mental health
-
Signs to Watch For at Home
- Tiredness or shortness of breath that’s new
- Swelling in the belly, legs, or around the eyes
- Blue lips or fingertips
- Fast or irregular heartbeat
- Belly pain, diarrhea, or poor appetite
- Unexplained weight loss
- Fainting or dizziness
-
Daily Habits That Help
- Encourage regular physical activity
- Keep your child well-hydrated
- Support healthy eating and good sleep
- Avoid smoking or vaping exposure
- Stay up to date on vaccines (hepatitis A/B, flu)
-
As Your Child Grows
Fontan patients need lifelong care. When your child becomes a teenager, the team will help them learn how to manage their own health and transition to an adult congenital heart specialist.
-
You’re Not Alone
Caring for a child with a Fontan circulation can feel overwhelming. Your care team is here to support your family medically, emotionally, and practically. With regular follow-up and healthy habits, many Fontan patients thrive into adulthood.
