++
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.
++
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.
++
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.
++
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 ...