If I’m posting this on
time, then today should be February 6th 2015. Tomorrow starts Congenital
Heart Defect Awareness Week.
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| Faces of CHD: from left to right, Bo, 1996-Still Alive, Matthew, 1996-2003 (May his memory be Eternal), Chelsea 1994-Still Alive |
The definition of a
Congenital heart defect is a structural problem with the heart or main arteries
that develops before birth. Here’s the sad thing. Every year in the United
States, 1 out of every 112 live births, or roughly 40,000 babies, are born with
at least one heart defect. 1 in 5 of those 40,000 will require corrective
surgery in their first year in order to save their lives.
CHDs and birth defects in
general tend to come in clusters, so a child born with a heart defect, may have
more than one, and/or also have other muscle problems, problems with the
function of other organs, immune system problems, and the possibilities are
actually endless.
There are 40 different
known kinds of heart defects, ranging from those that don’t interfere with the
function of the heart and amount to little more than an internal birthmark, all
the way to those that require full heart transplants in order for the patient
to have any chance of surviving to adulthood.
The scary thing about CHD
is that it is more common and more fatal than all forms of pediatric cancer
combined, and yet research into the causes, detection, and treatments of CHD as
a whole, is disturbingly underrepresented in terms of government research
funding.
What is sad, is that when
we as people pay attention, we have proven we CAN save these children’s lives.
In 1994 it was expected that 50% of CHD babies born that year would die before
he or she reached their eighteenth birthday. In 2014 that rate had fallen to
35%, the reason? There are a few.
1.
Better and Earlier treatment. Thanks to advances
in medicine that make life saving surgeries safe and possible earlier in life,
and drugs and machinery such as the Berlin Heart, that help keep children
healthier otherwise and alleviate the strain of everyday life on their hearts,
therefore helping prevent further damage to the heart while they are waiting
for surgery, fewer children are dying and/or suffering long-term damage before
they can receive the treatment they need.
2. Better
detection: The fact is, that unless the required treatment IS a full heart
transplant, lack of treatment options isn’t usually to blame for most CHD
related deaths these days. More often than not, it is because the CHD isn’t
detected and treated in time. There are a few ways of detecting CHDs, including
prenatal ultrasound, neonatal ultrasound, detection of a heart murmur, labored
breathing, cyanosis (lack of Oxygen which is apparent in a blue/grayish tint to
skin around the mouth and fingernails), or the use of a pulseoximity meter.
Pulsox is more accurate, cheaper, less time consuming and less invasive than
almost any other method at our current disposal for detecting CHDs in babies
that appear healthy. For this reason, most states now have it on their list of
neonatal medical tests that are mandated by law. Of the 8 states that currently
don’t, (Washington, Idaho, Montana, Wyoming, Colorado, Kansas, Hawaii, and
Mississippi) Mississippi has introduced legislation which if passed would
require pulseox as a newborn screening, Hawaii has a similar bill already in
the works, and in the remaining six that have yet to make laws requiring it,
Wyoming and Kansas are currently considering it, and a majority of hospitals in
all 6 states are using pulseox as a normal part of their own protocol.
Here’s a map detailing
current Pulsoximeter legislations:
Still the sad fact
remains that of the 40,000 CHD babies born last year, 14,000 of them STILL will
not live to see the big 18, and in the year 2015, that’s appalling.
If you would like to help, there are several ways to do
it.
You could donate to the
organizations where most of the funding for research is coming from.
Here is
a link that will help you learn more about pusloximeter screening and allow you
to sign a petition to enact legislation in your state if it does not currently
have one:
Or, starting
tomorrow, wear red, support the cause!
