Info For Patients and Families

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Information for Patients and Families


Congenital heart disease (CHD) is a heart condition that a patient is born with, and affects 8/1000 live births making it the most common congenital birth defect. It can encompass abnormalities in the rhythm of the heart, as well as a wide array of structural heart problems. These problems can range from mild (never requiring cardiac surgery), to severe (requiring multiple different stages of open heart surgeries). CHD can involve abnormal or absent chambers, holes in the heart, abnormal connections in the heart, and abnormalities in the function or squeeze of the heart. Most congenital heart conditions affect patients from childhood through adulthood.

Lifelong care for child​ren and adults living with congenital heart defects

​Frequently Asked Questions

CHD Video Q&A Series

Dr​ Matt Oster

Dr Keila​ Lopez Ms Jod​​i Lemacks​ Resources

There are a number of patient and family organizations dedicated to raising awareness both nationally and locally. To become involved in these efforts or for more information, please visit the Web pages below.



Insurance Considerations

The Affordable Care Act (ACA) became law on March 23, 2010. There are many parts of this law that will help children and adu​​lts with congenital heart defects (CHD). The following is a list of some changes that will take effect in 2014 that will improve access to health insurance coverage for people with CHD.

  • No more pre-existing condition clauses. Starting in 2014, health insurance plans cannot deny coverage to people because of medical conditions, such as CHD. Insurance companies cannot charge the person more because of a condition. The only exception for this is an individual health insurance policy that was purchased on or before March 23, 2010. However, a person with one of these plans can switch to a marketplace plan during open enrollment that begins in October 2013.
  • Prohibits rescissions and frivolous cancellations of insurance coverage. Essentially, this means that insurance companies can no longer drop insurance coverage once a person gets sick and needs medical treatment. They also will not be allowed to cancel insurance coverage because of an honest mistake on an insurance application.
  • The right to appeal private health plan decisions. With the passage of the ACA, insurance companies are now required to tell someone why a claim has been denied and they must also explain how to appeal that decision. If, after review, the insurance company still denies the claim, an additional external review is guaranteed.
  • No annual or lifetime dollar caps on covered services. People with CHD and other conditions will no longer face lifetime caps on their insurance. Annual dollar limits are still allowed for only those plans purchased on or before March 23, 2010.
  • Young adults under 26 may be covered under their parent’s insurance plans. Young adults who don’t have other options for insurance can remain on their parents’ plan until age 26. This helps young adults with CHD who may be looking for work or have a job that does not provide health insurance.
  • Insurance plans will have to provide adequate networks of providers. Starting next year, insurance plans will have to offer an adequate network of providers and must allow you to choose any available primary care provider in your plan’s network. Insurance plans will no longer be able to require higher copayments or coinsurance if you receive emergency care from an out-of-network provider.
  • Congenital Heart Disease Specific Funding. Parts of what was originally called the Congenital Heart Futures Act were also included in the ACA. These included directives to the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) to improve research and data collection across the life-span.
For more information about the Affordable Care Act and Insurance Exchanges, please visit​ 
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