Subscribe today for more stories, tips, and updates.

Cincinnati Children's Blog
  • Subscribe
  • CincinnatiChildrens.org
  • Contact Us
  • Blog
  • Healthy Living
  • Rare and Complex Conditions
  • Safety and Prevention
  • Heart Conditions
  • Learning and Growing
  • Research and Discoveries
  • ?
  • Blog
  • Healthy Living
  • Rare and Complex Conditions
  • Safety and Prevention
  • Heart Conditions
  • Learning and Growing
  • Research and Discoveries
  • ?
  • Subscribe
  • CincinnatiChildrens.org
  • Contact Us
HOME/Heart Conditions/Living with Congenital Heart Disease: Are You Lost to Care?

Living with Congenital Heart Disease: Are You Lost to Care?

Living with Congenital Heart Disease: Are You Lost to Care?
July 22, 2016
1 Comments
By: Andrew Redington, MD

If you knew a family member or friend had a potentially dangerous or catastrophic health issue but wasn’t seeing a doctor for it, would you recommend that they see one?

I think the vast majority of us would.

Many patients born with a heart condition get surgically “repaired” in early childhood and then along the way stop seeing their cardiologist. This is a potentially dangerous situation, because many things can change with the heart and original operation and something may go wrong 5, 10, 15+ years after their initial surgery.

In the medical community we describe these patients as being “lost to care.” There are about 550,000 teens and adults who fit this description in the United States, but these statistics may even be underestimated. We define lost to care as someone who is not seeing a cardiologist specifically trained to care for, monitor, and treat adults with congenital heart disease (CHD).

So how do you know if you, a family member or friend is one of these approximately 550,000?

Here are some questions to ask that could help you determine if you were born with a heart condition and are now lost to care:

Are you or a loved one lost to care infographic.

If you answered “yes” to questions 1, 2, or 3, you are very likely to have congenital heart disease (CHD). Please schedule an appointment with a cardiologist who has expertise in CHD. This blog post offers more information on why it’s so important to find care.

 

 

Contact the Heart Institue at Cincinnati Children’s
Call: 513-803-2243 Fill out a form and a team member will be in touch Find a location near you
Subscribe today for more stories, tips, and updates.

Related Articles

Caring for the Caregivers of Children with Congenital Heart Disease 
Caring for the Caregivers of Children with Congenital Heart Disease 
A Lifetime of Care – Transitioning from Pediatric to Adult Cardiology
A Lifetime of Care – Transitioning from Pediatric to Adult Cardiology
Born with a Heart Defect and Lost to Care
Born with a Heart Defect and Lost to Care
Born With a Heart Defect: Q&A About The COVID-19 Vaccine 
Born With a Heart Defect: Q&A About The COVID-19 Vaccine 
TAGS:
  • ACHD
  • adult congenital heart disease
Avatar photo

About the author: Andrew Redington, MD

Andrew Redington, MD, is the executive co-director of the Heart Institute and chief of Pediatric Cardiology at Cincinnati Children’s. He specializes in both pediatric and adult congenital heart disease and has written more than 300 peer-reviewed publications, 30 book chapters and has co-edited seven books. Dr. Redington lives in Cincinnati and in his spare time enjoys the amazing arts the city has to offer.

Write A Comment

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Comments

Rick July 26, 2016 at 7:51 am

Great blog! I love the way you created a simple (and easy to follow) series of questions to help direct those who are lost to care to getting appropriate ACHD care. Well done.

Topics

  • Cancer and Blood Diseases
  • Child Development and Behavior
  • Childhood Obesity
  • Chronic Care Networks
  • Cincinnati Walks for Kids
  • Featured Faces
  • Fetal Conditions
  • Fitness and Nutrition
  • Food Allergies
  • Ghana 2012
  • Health Care Public Policy
  • Health Care Quality
  • Health Care Reform
  • Healthy Living
  • Heart Conditions
  • Hospital Operations
  • How We Do It
  • Learning and Growing
  • Meet The Team
  • Nurses Week 2012
  • Patient Family Experience
  • Patient Flow
  • Patient Safety
  • Patient Stories
  • Pin of the Week
  • Radiology
  • Rare and Complex Conditions
  • Research
  • Research and Discoveries
  • Safety and Prevention
  • Share Your Story
  • Technology
  • Uncategorized
  • Vaccines
  • Volunteerism
  • What Makes Us Different
  • What's New
See All Topics
See Less Topics

Subscribe

Never miss a post! Sign up to get new blog updates delivered to your email.

Popular Posts

  • 6 Questions to Ask When Your Child Complains of Chest Pain 1.8k views
  • Caring for the Caregivers of Children with Congenital Heart Disease  0.9k views
  • Bedwetting Solutions: Tips for Helping Your Child Overcome It 759 views
  • Button Batteries: What Parents Should Know 709 views
  • Laryngomalacia: Is My Child’s Noisy Breathing Serious? 690 views
  • Febrile Seizures: Why They Happen and What to Do 679 views
About

The Cincinnati Children’s blog features thoughts and perspectives from our experts on all things pediatric health. This blog does not provide medical advice, diagnosis, or treatment. Learn More »

Contact Us
  • 3333 Burnet Avenue, Cincinnati, Ohio 45229-3026
  • 1-513-636-4200 | 1-800-344-2462
  • TTY: 1-513-636-4900
  • socialmedia@cchmc.org
Connect With Us
  • Subscribe
  • CincinnatiChildrens.org
  • Contact Us

© 2009-2022 Cincinnati Children’s Hospital Medical Center