I am a firm believer that everything happens for a reason. We were blessed with Olivia, because we will all make a difference.
The Beat of a Broken
Heart by Melanie Williams
“Waaaa…”
The sound of a newborn baby’s cry is something that a mother thinks about from
the moment a pregnancy test turns positive. Even though this was my third time
around, I was no different. The first cry for my baby girl was more than just a
sign of new life, but also the start of a relentless battle for her little life.
At 20
weeks pregnant, I went for a routine prenatal growth ultrasound. During that
ultrasound, my husband and I were informed that our new addition had a
congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). HLHS is a condition where the left ventricle
of the heart does not form or is very small.
The mitral and aortic valves are too small or missing in some cases as
well. Imagine HLHS as having only half
of a heart. Every diagnosis has varying degrees of complexity, but no matter
what, each case is life threatening without medical interventions. After much research,
we discovered that we were not alone in this fight. According to the CDC,
(Center for Disease Control) 960 babies are born in the US each year that are
affected by this disorder. Basically, about 1 out of every 4,344 babies born in
2012 will have to battle this same fight.
Desperately
trying to adjust to this news, my husband and I searched for answers. The
answers we found were quite alarming. 1 in 100 babies are born each year with
some sort of congenital heart defect. Some are diagnosed in early pregnancy by
ultrasounds, but many are not. With so
many newborns affected each year, “why is there not more awareness,” I
wondered? And so I began my mission towards CHD awareness, to make sure my
daughter’s journey would be one that would make a difference. This article, contacting politicians,
reaching out to newly diagnosed moms, all are things I and other heart moms are
doing. There is now even a CHD Awareness day in Louisiana.
Our
heart warrior, Olivia Ann, arrived on November 1st, 2011 at 5:15PM. She looked great, but was quickly taken to
the NICU for further evaluation. Olivia was moved to the nearby Children’s
Hospital of Philadelphia (CHOP) shortly thereafter and her battle began 1,300
miles from our home in New Orleans, LA.
Olivia
underwent her first of three open heart surgeries, the Norwood, at 7 days old.
To hand over your child to a complete stranger and trust that they will do all
in their power to help her; was the hardest thing I have ever had to do as a
mother. Yet, before I knew it, Olivia was in recovery; hooked to breathing
machines, monitors, medications and wires coming from everywhere. My baby had
turned into a science experiment. For every one step forward, she took 3 steps
back those first few days, but she rallied in her own time and we were discharged
at 22 days old.
Olivia
grew in the next few months and it was time for surgery number 2, the Glenn, at
4 ½ months old. The recovery was drastically quicker than the first time around,
and we were home in 9 days. This was pretty remarkable, when thinking of all
that comes with having an open heart surgery.
Since
her birth, there have been times that have been critical in her battle. There
have been ups and downs, and we are thankful for each and every one of them.
The sad reality is that not all babies are as lucky as our sweet Olivia. Babies
are not always diagnosed before birth and some often get sent home with parents
who are unaware that anything is wrong.
As a
new mom, you want information. You want to protect your baby from any harm, but
do you know the right questions to ask?
Did you know that red light device a nurse puts on your finger is the
same test that can save these babies? Several
congenital heart defects can be detected by this simple, painless procedure of
checking the pulse oxygenation levels in the blood stream after 24 hours of
life. As you have experienced, this is
an easy 2 minute test that can make a difference. It can save your baby’s life.
Some other quick warning signs to memorize are dusky coloring, turning blue,
trouble feeding, fast breathing, sweating along the forehead, and tiring
easily. Any of these symptoms should be reported to your doctor immediately
with a request for an examination.
The
sweet sound of Olivia’s coos with her toothy smile can light up any room. Our
worst nightmares consist of her defect going undiagnosed, the hospital never
testing her pulse oxygenation, or going home from the hospital thinking we had
a perfectly healthy angel; only to find her blue and rushing to the E.R. for
emergency surgery. The best advice any
heart mom could ever give you is this: request that your hospital test your
baby’s pulse oxygenation. As I wait for
Olivia’s final open heart surgery at 3 years old, this is what I can do, help
others and bring more awareness to the 1 out of every 100 babies born with a
congenital heart defect.
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