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The number of people living with congenital heart disease is rising yearly. Approximately 1 in 300 children is born with significant heart disease that requires intervention in the first month of life. In the United States, there are approximately 35,000 children born with heart disease each year. Secondary to advances in surgery, medicine, and intensive care unit (ICU) care, most of these children live into adult life. There are now as many adults with congenital heart disease as there are children. Long-term considerations for their care and well-being need to be considered too. This section will deal with some of the day-to-day issues that face these patients.

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Medical insurance and insurance eligibility issues remain problematic in the current US health care system. The financial stresses and strains placed on families with children with congenital heart disease can be enormous. Health care costs vary internationally but in the United States these issues can be challenging and may negatively impact upon care. In the current system, children, adolescents, and some young adults are covered under their parents’ private insurance group contracts. Dependent care continues until age 18, 21, or 25, depending upon such things as academic or dependent status and the parent’s contract with his or her employer. Some insurance contracts will allow young adults with disability to continue under the parent’s coverage. Even with some form of private health insurance, families still face significant financial hardships with the costs of medicines and needed services. Parents and older patients may decide when, where, and how much to work to simply have access to a certain level of insurance. Families without private health insurance may qualify for state or federal programs. There are many regulations for both initially receiving and maintaining eligibility, and the bureaucratic intricacies can be overwhelming. The children may easily have gaps in their health care coverage.

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One major problem relates to adolescents and young adults as they try to transition to independence. Some will simply need continuous financial help from their parents in regard to medical issues. Others, with more severe lesions who can be classified as disabled, may qualify for Medicare and Social Security Disability (SSI). A Web site that may be helpful is www.disabilitysecrets.com/advice.html.

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Most children with congenital heart disease can expect to live to be adults; as survival has increased, attention has been diverted towards some of the other important aspects of care, including neurodevelopmental, behavioral, emotional, and psychosocial issues. Improving quality of life issues starts with the fetus. Prenatal diagnosis of ductal-dependent lesions has been shown to improve not only survival but also neurodevelopmental outcomes, as these neonates are less likely to have preoperative metabolic acidosis. At the initial diagnosis of the complex heart disease, the family is overwhelmed; indeed, most if not all families cannot absorb the majority of the information proffered at that time. Prenatal diagnosis gives the family time to prepare and anticipate such things as health insurance, time ...

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