Growth
and Development
Children
with congenital (present at birth) heart disease
often grow and develop more slowly than other
children. For example:
- Your child may look
much younger, thinner, and, perhaps, frailer
than other children the same age.
- Your child's physician
may tell you that your child's height and weight
are in lower "percentiles," meaning that a significant
number of children in the United States are
taller and/or heavier than your child.
- Your child may be slower
to reach developmental milestones than healthy
children, such as rolling over, sitting, walking,
talking, and toilet-training.
Nutritional
issues impact growth and development in children
with congenital heart disease.
- Hearts that pump inefficiently
due to a congenital heart defect must also pump
more rapidly to meet the body's needs. The body's
metabolism is faster under these conditions,
and therefore, extra calories are needed in
order for a child with congenital heart disease
to maintain weight and grow.
- Children with congenital
heart disease may become tired quickly since
their bodies are working harder under the stress
of the heart defect. They may not have enough
energy to eat properly. Infants may tire quickly
during a feeding or even sleep through it. Older
children may pick at their food, complain of
being full after a few bites, or ask for rest
breaks. Even though more calories are needed
just to maintain weight, these children are
often too tired to eat enough.
Physicians,
nurses, and nutritionists can help develop a plan
to ensure that your child gets adequate nutrition
to meet his/her body's needs. Suggestions may
include the following:
- high-calorie milk,
formula, or breast milk
Special nutritional supplements may be added
to formula or pumped breast milk that increase
the number of calories in each ounce, thereby
allowing your baby to drink less and still consume
enough calories to grow. High-calorie drinks
are available to boost older children's nutrition.
- supplemental tube
feedings
Tube feedings can either supplement or take
the place of regular feedings in a child that
needs to take in more calories and nutrients
in order to grow. Tube feedings are given through
a small, flexible tube that passes through the
nose, down the esophagus, and into the stomach.
Infants may be allowed to drink what they can
from a bottle, and then are fed the remainder
through the feeding tube. Infants who are too
tired to bottle-feed may receive their formula
or breast milk through the feeding tube alone.
Older children may receive tube feedings at
night, and be allowed to eat what they like
during the daytime.
- high-calorie foods
and snacks
Try to offer your child nutritious foods and
snacks that are high in calories and nutrients
when possible. Read labels and become aware
of the calorie content of foods. For instance,
some baby foods have very few calories, while
others have many. Healthy foods such as vegetables
may not have very many calories, but adding
some melted cheese or dip can boost the calorie
content. Avoid giving your child foods that
have empty calories - foods with a lot of sugar
and few nutrients such as sugary soft drinks,
junk foods, and fast foods. Try to give your
child a balanced diet, as well as one higher
in calories. Ask your child's physician, nurse,
or nutritionist for additional suggestions.
Children
with congenital heart disease may fall behind
in their development for several reasons, including:
- Inadequate nutrition
does not meet the body's energy requirements,
or allow for proper growth and development of
muscles, bones, and brain and nerve cells.
- Inadequate nutrition
does not meet the body's energy requirements,
causing children to tire quickly or not be able
to physically keep up with others their same
age.
- Illness and frequent,
or prolonged, hospitalizations may prevent the
child from receiving stimuli that help with
development, such as being played with, talked
to, held, or touched.
Parents
of children with congenital heart disease can
play an active role in promoting the development
of their child, at home or in the hospital. Physicians,
nurses, physical therapists, and other healthcare
team members will provide appropriate guidelines
that are tailored for each individual child. Some
ways that parents can encourage the development
of their children may include the following:
- Touching and talking
to your child can soothe him/her and provide
reassurance, especially in the intensive care
unit or right after surgery, even if he/she
has been sedated.
- Encourage light physical
activity after surgery, as directed by your
child's physician.
- Provide your child
with a variety of toys and other objects that
stimulate his/her senses of hearing, vision,
touch, and smell, even while in the hospital.
Bring items from home, or ask the hospital staff
if they can provide stimulating objects for
your child. Many hospitals have special departments
designed to help nurture your child's emotional
and physical well-being while he/she is a patient.
- A physical therapist
can be of assistance in providing exercises
that are safe for children of all ages to encourage
their development. Ask your child's physician
or nurse if there are any limitations regarding
physical stimulation and exercise.
- Allow your child to
participate in everyday family activities, within
his/her physical limitations. Children also
learn new skills from interaction with brothers,
sisters, and friends.
Advances
in the treatment of children with congenital heart
disease have grown tremendously since the first
successful shunt operation in 1945 and the first
open heart surgery to close an atrial septal defect
(ASD) in 1952. Approximately 85 percent of babies
born with congenital heart disease will now survive
into adulthood. This “new generation”
of adults with congenital heart disease is growing
rapidly.
These
adults, however, are seldom “cured,”
and the most complex defects often require multiple
medications and other therapies. Complications
may develop and repeat interventional and/or surgical
procedures may be required.
Issues
related to lifestyle and well-being important
for these individuals. Such issues include, but
are not limited to, the following:
- college and career
choice
- marriage and family
- pregnancy
- insurability (ability
to get health and life insurance)
- travel
- relocation
Regular
follow-up care at a center offering pediatric
or adult congenital cardiac care should continue
throughout the individual’s lifespan.
Consult
your child's physician regarding the specific
outlook for your child.
Click
here to view the Online
Resources of Heart Center
|
