Preparing for Travel With a Child With HLHS
Traveling with a child is always an adventure—but when your child has HLHS (Hypoplastic Left Heart Syndrome), it takes a little more planning, patience, and peace of mind. The good news? With thoughtful preparation, travel is possible and can be a beautiful, meaningful experience for your family.
Here are some practical and reassuring tips to help you feel confident when traveling with a child with HLHS.
Start With Your Child’s Medical Team
Before booking anything, speak with your child’s cardiologist. Confirm that your child is safe to travel and ask about:
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Medication adjustments
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Activity limitations
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Whether your child is fit to fly
Ask for doctor’s letters confirming:
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Your child is safe for air travel
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Permission to carry medications and medical supplies
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Any special medical needs
(These letters are extremely helpful at airports and security checks.)
Plan Ahead for Flights
If your child needs oxygen on the plane, contact the airline at least 48 hours before the flight to arrange it. Each airline has different rules, so early communication is key.
Make sure you bring:
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Medical documentation (translated if needed)
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Doctor’s letters
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Contact information for your child’s doctors
Pack Medical Essentials Carefully
Create a dedicated medical bag with:
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All medications (plus extras)
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Feeding supplies
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Backup medical equipment
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Pulse oximeter (oximeter)
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Prescriptions and medical records
Always keep these items in your carry-on, not checked luggage.
Choose a Gentle Itinerary
Plan calm, low-energy activities and allow plenty of rest time. Avoid anything physically demanding and always stay within reasonable distance of a medical facility, just in case.
Slow travel isn’t a limitation—it’s a chance to truly be present.
Book Comfortable, Smart Accommodations
Choose places that support comfort and flexibility:
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Close to hospitals or clinics
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Vacation rentals with space and privacy
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Quiet environments that allow rest
Comfort matters—for both your child and you.
Be Ready, Even If You Never Need It
Emergencies are rare, but preparation brings peace of mind. Always have:
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Medical records
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Medications
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Emergency contacts
Prepared doesn’t mean anxious—it means empowered.
A Gentle Reminder
Traveling with a child with HLHS can feel overwhelming, but you are stronger and more capable than you realize. With planning, support, and self-kindness, your family can still explore the world—one careful, beautiful step at a time.
💙 You are not alone on this journey.
