A heart defect is a problem in the heart's structure.
Kids who have a heart defect were born with it. Heart defects are often called "congenital,"
which means "present at birth." Heart defects are also sometimes referred
to as "congenital heart disease."
Children with minor heart defects may not need any treatment. But some babies have
serious symptoms that need medical or surgical treatment within the first year of
life. They'll be cared for by:
pediatric cardiologists: doctors who specialize in treating children's
heart problems or
pediatric heart surgeons: doctors who specialize in children's
heart surgery
Procedures done through cardiac
catheterization — such as balloon angioplasty or valvuloplasty — can widen an
obstructed blood vessel or valve. Another procedure, transcatheter device occlusion,
can close abnormal openings or holes within the heart or blood vessels without surgery.
Some problems, such as small- or moderate-sized ventricular septal defects, may
close or get smaller as a child grows. While waiting for the hole to close, the child
might have to take medicines.
Complex defects found early might need a series of operations that are finished
when a child is about 3 years old.
What Happens After Treatment?
Kids treated for a defect (surgically or medically) will need regular visits with
a pediatric cardiologist. At first, these visits might happen often — perhaps every
month or two. Later, they might be cut back, sometimes to just once a year.
Some physical activities might be limited, but kids can still play and explore
with friends. Always check with the cardiologist about which activities are OK for
your child and which to avoid. Some competitive sports could be off limits, for example.
Preventing Infection
Infective (or bacterial) endocarditis is an infection of the tissue that lines
the heart and blood vessels. Kids with heart defects used to get
before procedures that could let
get into the bloodstream, such as:
dental work
surgery in body areas where bacteria tend to grow, such as the mouth or gastrointestinal
tract
But now, preventive antibiotics are given only to some children with heart defects.
This includes those who:
have a type of congenital heart disease that causes cyanosis (bluish color
of the skin)
have had infective endocarditis before
had their defect repaired with prosthetic material (like an artificial heart valve)
or device
The cardiologist will know the latest guidelines, and can advise you based on your
child's diagnosis.
Kids with heart defects should take good care
of their teeth. They should brush and floss daily, and have regular dental visits
and cleanings as often as the dentist recommends.
Looking Ahead
Most heart defects are now treated during infancy. So when your child is old enough
to understand, explain what happened. Talk about why your child:
has a surgical scar
needs to take medicine
has to visit the pediatric cardiologist
Describe the treatment in a way your child can understand.
It can be tempting to be very protective. But help your child lead as normal a
life as possible. Talk with your cardiologist or the care team about safe ways to
do this. They are there to support your child and the whole family.
It also can help to look for local and online support groups. This can connect
you to other families who can share what works for them.
What Else Should I Know?
As kids get older, it's important to help them learn how to take charge of their
medical care.
A younger teen could fill a prescription or schedule an appointment. Older teens should
understand health insurance coverage and know how to access their medical records.
Help an older teen move from a pediatric cardiologist to one who cares for adults.
He or she should play an active role in choosing the new doctor. Encourage your child
to make appointments, ask questions and take notes, and set aside time to speak with
the doctor alone.
To prepare for adulthood and manage their health care, teens should know:
about their heart condition
when to get care
the names of all medicines, their dosages and when to take them, common side effects,
and interactions with other medicines
if they have allergies to food or medicine
the answers to most questions about their health and medical
history
how to:
schedule appointments
order prescription refills
contact the care team
manage medical tasks outside of home
what problems can happen if they don't follow the treatment plan
about their insurance coverage
to always carry their insurance information with them
