Tuesday, February 7, 2012

CHD Awareness Week

CHD Facts

                Congenital Heart Defects are the #1 birth defect worldwide
                Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
                About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
                Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
                Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
                Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
                The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
                Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
                The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD
                Though research is ongoing, at least 35 defects have now been identified
                Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
                It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications
               Facts From ~ http://www.itsmyheart.org/chd-information/chd-facts/  

Emma is a CHD baby.  Emma was born on October 4th 2010 with a severe heart defect called Hypoplastic Left Heart Syndrome with Intact Septum.  According to her cardiologist, this specfic heart defect is ‘incompatible with life.’  What he meant by this is that if undiagnosed prenatally, Emma would not have lived past a few hours old.  However, Emma did survive and after a CRAZY year journey (read here) Emma is alive, happy, and developing despite the ODDS.  I love my little CHD heart hero.

Please join me in spreading awareness during CHD awareness week (Feb 7th-14th).

You can help by:
1.    Posting Emma’s Picture as your profile picture this week.
2.    Wear RED in honor/memory of CHD babies.
3.    Donating Time or Money to organizations that help support these babies.

My heart Hero!


  1. I love this post - thank you for sharing!

  2. hello,i saw your profile today,i get really sad,i hope your daughter gets well day by day,,you're a happy family,,God bless you,your family and your child,,
    Samantha from U.A.E

  3. Great post! Thank you for including my Born with a broken heart ribbon! I would gladly send you a car decal if you would like, prityinsid@hotmail.com
    Thanks again,
    Fellow heart mother to Lily (TGA,VSD, PS)

  4. What a beautiful heart wrenching story. Thank you so much as a fellow heart mum for sharing. That is an amazing born with a broken heart ribbon Carolyn. I would love to order decals as well. Also another heart mum suggested making your ribbon the official CHD ribbon. Her name is Annette and I am sure will contact you as well.

    Heart mum to S♥phia TOF w/APV