Awareness...

February is American Heart month.  This month the nation pushes recognition and awareness of all things HEART.  Today begins CHD Awareness week, February 7 -14.  CHD stands for Congenital Heart Defect.  This, of course, means more to us now than it ever has in the past.  Awareness is important people!  I, for one, never really thought about CHD’s prior to this, never really heard much about it.  Sure we hear about “heart disease” in adults and “birth defects” in children but rarely do I hear anything about “heart defects” in children… which is one reason why it was so shocking to us that our child has one.  Surprisingly, CHD’s are THE #1 birth defect in children and occur in almost 1% of all births, which are approximately 40,000 births a year.  CHDs are also the most common cause of death in infant births due to birth defects…primarily because of unawareness. Doctors do not routinely check for heart defects, only if they are clearly present on a sonogram, like the heart is on the wrong side of the body (which happens more than we think)…or if you have an existing condition that requires a detailed sonogram (such as in our case with MTHFR), are these defects caught...though many are hard to detect even on a sono.  Many of these babies look and act perfectly normal in utero.  My Hallie sure does…she measures perfect, has a normal heart rate and she moves and kicks A LOT!  I would not know any different.  Makes me thankful I have a weird blood disorder that requires a more detailed sono J.  It is our responsibility to put checks in place, to push for those checks to be mandatory, just ask your doctors to take a closer look.  You can also check by requesting your doctor do a 45 second "pulse ox" before leaving the hospital with your newborn.  It is a small device that goes on the babies foot, nothing invasive, very simple to do, simply checks their oxygen levels.  The statistics really are staggering… CHDs are as common as autism and 25 times as common as cystic fibrosis, both of which I know all of us have heard of…so why are we not as aware of congenital heart defects?  We need to push awareness, so that more funding is available, so that we can have more checks in place, so that we can save more tiny lives in the future.


All of my statistical data was pulled from this fact sheet put out by Mended Little Hearts, some of these facts and statistics are shocking to me.  Please take a look when you have a chance:
http://mendedlittlehearts.org/Docs/Facts%20&%20Statistics%20About%20CHD.pdf



1981 was the year of the first successful Norwood procedure (1^st of 3 surgeries) performed on a newborn baby.  Just 33 years ago.  I am 34.  In my short lifetime an entire world was created just for these heart babies and their families.  How amazing is that?! The support and resources available for coping with this diagnosis are astounding.  We are very blessed to be a part of such a strong and positive support system… from the doctors and nurses, to the support groups, to our family and friends. Thank you all.

"Above all else, guard your heart, for everything you do flows from it."  Proverbs 4:23

"A heart at peace gives life to the body..." Proverbs 14:30

"When a man is gloomy, everything seems to go wrong; when he is cheerful and full of hope, everything seems right."  Proverbs 15:15

"A cheerful heart is good medicine." Proverbs 17:22

“Be Still and know that I am God.” Psalm 46:10

Thank GOD ALMIGHTY for modern medicine.  Thank you for those special people who make it their life's work to find ways to help tiny babies thrive and live outside their mother's womb when not so long ago they would not have stood a chance. Thank you for the families who commit time and energy to support each other and this cause.  Thank you for providing us with the hope, peace, and strength to deal with this situation on a daily basis.  I ask that you continue to bless us with these things as we continue to be still and listen to what you have to say and watch how your miraculous works affect our lives.  We could not do it without you. Amen.