Living With a Congenital Heart Defect
The outlook for a child with a congenital heart
defect is much better today than in past years. Advances in testing and
treatment mean that most children with heart defects grow into adulthood and
are able to live active, productive lives. Many need no special care or only
occasional checkups with a cardiologist as they grow up and go through adult
life.
The small number of children who have complex heart
defects need long-term, special care by trained specialists to stay as healthy
as possible and maintain a good quality of life.
Children and Teens With Congenital Heart
Defects
Routine Medical Care
Ongoing medical care is important for your
childs health. This includes:
- Checkups with your childs heart specialist
as directed
- Checkups with your childs pediatrician or
family doctor for routine exams
- Taking medicines as prescribed
Most children with severe heart defects are at
increased risk for
bacterial
endocarditis, a serious infection of the heart valves or lining of the
heart. Your child's doctor or dentist may give your child antibiotics before
medical or dental procedures (such as surgery or dental cleanings) that could
allow bacteria into the bloodstream. Talk to your child's doctor about whether
your child needs to take antibiotics before such procedures.
As children with heart defects grow up and become
teens, its important that they understand what kind of defect they have,
how it was treated, and what kind of care may still be needed. This
understanding will help the teen take responsibility for his or her health. It
also will help ensure a smooth transition from care by a pediatric cardiologist
to care by an adult cardiologist. Young adults with complex congenital heart
defects require ongoing care by doctors who specialize in adult congenital
heart defects.
You may want to work with your health care providers
to put together a packet with medical records and information that covers all
aspects of your childs heart defect, including:
- Diagnosis
- Procedures or surgeries
- Prescribed medicines
- Recommendations about medical followup and how to
prevent complications
- Health insurance
Keeping your health insurance current is important.
For example, if your child is covered under health insurance through your
employer and you plan to change jobs, find out if health insurance through your
new employer will cover care for your childs congenital heart defect.
Some health insurance plans may not cover medical conditions that you or your
family member had before joining the new plan.
Its also very important for your child to have
health insurance as adulthood approaches. Review your current health insurance
plan. Find out how coverage can be extended to your child beyond the age of 18.
Some policies may allow you to keep your child on your plan if he or she
remains in school or is disabled.
Feeding and Nutrition
Some babies and children with congenital heart
defects dont grow and develop as fast as other children who are the same
age. If your childs heart has to pump harder than normal because of the
defect, he or she may tire quickly when feeding or eating and not be able to
eat enough.
As a result, your child may be smaller and thinner
than other children. Your child also may start activities such as rolling over,
sitting, and walking later than other children. After treatments and surgery,
growth and development often improve.
To help your baby get enough calories, discuss with
his or her doctor the best feeding schedule and any supplements your baby may
need. Make sure your child has nutritious meals and snacks as he or she grows
to help with growth and development.
Exercise and Physical Activity
Exercise helps children strengthen their muscles and
stay healthy. Discuss with your childs doctor how much and what kinds of
physical activities are best for your child. Some children and teens with
congenital heart defects may need to limit the amount or type of exercise they
do.
Remember to ask the doctor for a note for school and
other organizations describing any limits on your childs exercise or
physical activities.
Emotional Issues
Its common for children and teens with serious
conditions or illnesses to have a hard time emotionally or to feel isolated if
they have to be in the hospital a lot. Some feel sad or frustrated with their
body image and their inability to be a normal kid. Sometimes
brothers or sisters are jealous of a child who needs a lot of attention for
medical problems.
If you have concerns about your childs
emotional health, talk to his or her doctor.
Adults With Congenital Heart Defects
Adults with congenital heart defects who needed
regular medical checkups in their youth may need to keep seeing a specialist
who can care for their health. They will need to pay attention to the following
issues.
Medical History
Sometimes people mistakenly believe that the surgery
they had in childhood for their congenital heart defect was a cure.
They dont realize that regular medical followup may be needed in
adulthood to maintain good health.
Some adults may not know what kind of heart defect
they had (or still have) or how it was repaired. They should learn about their
medical history and know as much as possible about any medicines theyre
taking.
Preventing Bacterial Endocarditis
Some people may need antibiotics before medical or
dental procedures that could allow bacteria to enter the bloodstream. Talk to
your doctor about whether you need to take antibiotics before such procedures.
Regular brushing, flossing, and visits to the dentist also can help prevent
bacterial endocarditis.
Contraception and Pregnancy
Women who have heart defects should talk with their
doctors about the safest type of birth control. Many women can safely use most
methods, but some women should avoid certain types of birth control, such as
birth control pills or intrauterine devices (IUDs).
Many women with simple heart defects can have a
normal pregnancy and delivery. Women with congenital heart defects who want to
become pregnant (or who are pregnant) should talk with their doctor about the
health risks. They also may want to consult with specialists who help pregnant
women with congenital heart defects.
Health Insurance and Employment
When thinking about changing jobs, adults with
congenital heart defects should carefully consider the impact on their health
insurance coverage. Some health plans have waiting periods or clauses to
exclude some kinds of coverage. Before making any job changes, find out whether
the change will affect your health insurance coverage.
Several laws protect the employment rights of people
who have congenital heart defects. The Americans with Disabilities Act and the
Work Incentives Improvement Act try to ensure fairness in hiring for all
people, including those with health conditions such as heart defects.
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