Monday, February 28, 2011 unwelcomed guest

Eight years ago we began to live with this thing called Congenital Heart Defects.  It was never invited and never welcome in our home or any one else's for that matter. Just ask anyone who has a child or has lost a child with CHD. We have all  had no choice really. It forces itself on families that never would have guessed anything was wrong. When our beautiful baby girl was born it altered her perfect heart in a big way physically, but it absolutely did not bring her down in any way. Although CHD is'nt a guest any family would wish to have, we have all learned volumes from our journey with it.  I’ve learned about emotions that I have heard some talk about, but never really knew what they felt like.  Emotions like grief, anxiety, fear, hope, faith, –just to name a few. Just like so many others, Congenital heart defects are our trial and although Olivia looks normal and healthy…she fights everyday. Her heart and soul is as mighty as they come no matter what comes her way, as do all kids with CHD. All of us continue to grow stronger everday that they fight this fight. She will overcome CHD along with millions of others who are fighting against these defects, some who begin fighting even before they ever even take their first breath. We will not stop the fight.

Although it has taught our family so much about life and living and feeling, hope and trust. I wouldn’t trade those lessons for anything or any of the lifelong friends that we have met along the way. I continue to spread awareness because I don’t want CHD to hurt others or another mother to carry the grief of losing her child to CHD, like we have along with so many others.  I fight for other parents and families who suffer through surgeries and hospital stays like we have and those that will one day have to.  I don’t want another child to ever have to say through sobs, “I don’t want to do this!”  So, for now,  we accept that this is a part of our journey.  We accept this trial that has been thrown our way…We will learn from it and grow in ways I would have never thought possible, just as we have for eight years now. We do this with strength from the Lord and Faith in Him. "I can do all things through Christ who gives me strength.: Phil 4:13.

So even though February and CHD awareness month comes to a close. We will continue to fight and spread awareness all year long. We hope that you will join us.

Saturday, February 26, 2011

CHD Awareness Week/Month

So this month has been CHD Awareness Month! We have had so much fun spreading CHD awareness! We got to visit Gov. Nathan Deal at the Capital for the Proclamation declaring Feb. 7-14 CHD Awareness week in GA, we celebrated the week with a visit to Stars and Strikes with other CHD families from Kids at Heart and Children's Healthcare of Atlanta.

As this month comes to a close I thought that  I would share a few facts with those that may not be familiar with Congenital Heart Defects.
  • Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
  • 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 CHD. Source: Children’s Heart Foundation
  • 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. Source: Children’s Heart Foundation
  • This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
  • Though research is ongoing, at least 35 defects have now been identified.
  • 4-8% born with CHD have Hypoplastic Left Heart Syndrome
  • 4-10% born with CHD have Atrioventricular Septal Defects
  • 8-11% born with CHD have Coarctation of the Aorta
  • 9-14% born with CHD have Tetralogy of Fallot
  • 10-11% born with CHD have Transposition of the Great Arteries
  • 14-16% born with CHD have Ventricular Septal Defects
  • 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. Source: March of Dimes
  • 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. Source: March of Dimes
It is our responsibility to get involved with our political leaders on both the local, state and national level. Let them know that you are their constituent and you have a voice in regards to legislation that affects you and your family. I am currently writing the State Legislature and working with a State Representative to help get a Bill passed that would have every newborn tested with a Pulse Oximetry to test and look for CHD in the state of Georgia. You are your child’s advocate.