Some very minor forms
of congenital heart disease,
like very small holes in the heart or
very mild stenosis of different heart valves
may just need to be followed every
couple of years with
some sort of an imaging study
like an echocardiogram.
Other more significant forms of
congenital heart disease may require
surgery that could be
done via an open heart surgery,
or it could be done in
the cardiac catheterization lab
using
different devices or different techniques.
In certain very severe situations,
if surgery can't be performed,
transplant may be indicated.
The specific symptoms that
a child may have if they have
congenital heart disease are
really dependent on the age of the child.
For infants, their biggest source of
caloric expenditure is actually while eating.
And thus most signs of
congenital heart disease or heart failure
actually come when they're eating.
This can include shortness of breath,
difficulty breathing, or even
sweating while they're feeding.
Younger children will often present with
symptoms related to their abdominal system.
They may have nausea,
vomiting with eating, and
they may get those symptoms with activity as well.
Older teenagers meanwhile, tend
to present more symptoms such as
chest pain, fainting or palpitations.
They also may present with symptoms
during exercise or activity.
And that's actually a really big red flag
for me as a cardiologist.
If I hear about a child,
especially a teenager who's had chest pain,
or has fainted with
activity or with exercise,
I really need to see that child and I need to
make sure that they get an appropriate workup.
Often when your child has
just been diagnosed with
congenital heart disease,
it's hard to remember everything
that was said to you at that first visit.
You can be in shock
having just heard this news.
And oftentimes you may not
remember everything.
So it's important in the follow-up visits
to ask these types of questions.
What do my next five years look like?
Are there any procedures
that are going to be needed
in those five years? Any surgeries?
What type of testing, what type of follow-up,
what type of clinic visits
are going to be needed?
What does this mean
for my child's activities,
athletics, and the different things that
they want to do on a daily basis.
And most importantly, how do we work
together to make this child be
able to have as normal of a life possible
despite
that diagnosis of congenital heart disease.
You should ask your doctor what
type of procedures may be
needed for this form of congenital
heart disease in the future.
They may be performed
using open-heart surgery,
or they could be done using
cardiac catheterization.
For open-heart surgery,
it's important to ask
your doctor about the timing of
that surgery.
For the different, specific types of
congenital heart disease, there is
actually certain times where it's
better to do the surgery than
others to have the best possible outcome,
both short- and long-term for that child.
So ask your doctor if
there's a particular time that works
better for that particular
disease and for your child.
This is actually the most common question
I get from parents and from children
after we make a diagnosis
of congenital heart disease.
Athletics is so important
to many of these child's lives,
to their friendship groups and
how they interact with their communities.
In most forms of congenital heart disease,
we do our best to try to figure out
a way that they can still participate.
There are some forms
of congenital heart disease, however,
where certain sports
may not be advised.
For instance, for some of our patients,
they may have a certain type of
a genetic syndrome that makes
the walls of their arteries very weak.
And those patients, we don't
want them weightlifting or doing
any sort of heavy pushing that could cause
those arteries to dilate
and potentially rupture.
In most cases though, we are able to
figure out a way to have children
play the sports that
they love on a daily basis.
For our patients who
have congenital heart disease,
as they get older,
we often counsel them that
certain forms of congenital heart disease
are heritable.
This means that if
a parent has congenital heart disease,
there's a certain small risk that
their child may also
have congenital heart disease.
This may be the same type
of congenital heart disease
that their parent has,
or it may be different.
Thus, if those patients become pregnant,
we do need to monitor them
closely during pregnancy,
including doing extra scans of the fetus
using echocardiography during the pregnancy.
Fortunately, the vast majority of
our congenital heart disease patients
are able to
have children of their own in the current era.
The relationship between a patient,
their family and the cardiologist
is critically important.
We often follow these patients
for decades as they get
older. We watch them go
from babies to adults.
If something comes up that
you're not clear about,
but that doesn't make sense to you,
ask questions. Please
don't be afraid to reach out.
You should always feel able to contact
your cardiology team and
ask them any questions that may arise.