Hearts Aren’t Just for Valentine’s Day

Thursday , 13, February 2014 1 Comment

Have you seen all of the hearts around town?  Everywhere you look, you see them.  At the grocery store, in classrooms, and in restaurants.  Valentine’s Day is almost here and love is in the air.

When I was little, Valentine’s Day meant writing out cards to friends in my class, making sure that my crush got a special message.  When I was older, I always hoped that I would receive a special surprise from my valentine.

Then I became a mother to our third child.  That’s when Valentine’s Day, and more importantly hearts, became something something wholly different.

Our son, Luke Thomas, was born on March 12th, 2008.  My pregnancy with Luke was uneventful, so we had no reason to think that he would be born critical.  But he was.  A few hours after birth, Luke was diagnosed with Hypoplastic Left Heart Syndrome (HLHS).  The left ventricle in Luke’s heart was underdeveloped and did not work properly.  You can read more about HLHS on the Mayo Clinic’s website.  Essentially, our perfect baby boy was born with a severely broken heart.  Luke had open heart surgery at one week old and was able to come home with us until we lost him at 5 1/2 weeks old.

Luke

We were devastated.

My husband and I never thought that something like this could happen to our family.  How can a baby be born with only half of a heart?  Are we the only ones who have ever dealt with a heart defect?

The short answer?  No.

 

 

Since Luke was born, we have seen some frightening statistics about congenital heart defects (CHD):

*  Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

*  Congenital heart defects are the #1 cause of birth defect related deaths.

*  Congenital heart defects are the leading cause of all infant deaths in the United States.

*  Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands    of them will not reach their first birthday and thousands more die before they reach adulthood.

*  There are an estimated 2,000,000 CHD survivors in the United States.

*  For the first time, more than 50% of the CHD survivors are adults.

*  10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

*  More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

*  There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.

*  In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

*  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

*  In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

source:  The Children’s Heart Foundation

Scary, right?

Which brings me to why I am writing this post:  February is Heart Month.  February 7th-14th is CHD Awareness Week.

I owe it to my son to create awareness for the defect that took his beautiful life from us.  If we do not create awareness, the research necessary to save these babies will not be conducted.  There have already been so many advances in treatment for these children, but more needs to be done.

I read an interesting article today about using zebrafish as research subjects to help scientists understand the human heart.  Zebrafish!  My favorite part of the article is this:  “One day, doctors may be able to instruct a child’s heart cells to build tissue to repair a defect by inserting new genes into the cells”.  What a day that would be!

So, how do you know if your child has a heart defect?  You may find out through an ultrasound.  Or because of a heart murmur.

Here are some signs and symptoms of heart defects:

*  Rapid breathing

*  Cyanosis (a bluish tint to the skin, lips, and fingernails)

*  Fatigue (tiredness)

*  Poor blood circulation

source:  NIH

One thing that I (along with so many others) suggest is that parents should demand a pulse oximetry screening at birth.  This is a simple, non-invasive test that checks the oxygen levels in a baby’s blood.  This screening may be able to detect a heart defect in a child.

I hope that you will join me in raising awareness for congenital heart defects.  Please share this post with your friends and family, especially to any expectant parents.

Awareness is not only important to my family, but to the 1 in 100 families who are affected by CHD each and every day.

Have a Happy Valentine’s Day.  And the next time you see a heart, please remember the brokenhearted.

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  • […] in February, I told you about our son Luke.  He was born with a congenital heart defect called hypoplastic left heart syndrome.  After his […]

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