The sweet face of Congenital Heart Disease

February 1st, is the start of Heart Disease Awareness Month.  In this post I want to show you the face of Congenital heart Disease as well as share facts about CHD.

I have never shared this video with anyone except Ron and the kids.  I thought everyone needs to see the sweet face and hear the cry of a baby born with Congenital Heart Disease, in our case Hypoplastic Right Heart syndrome. This is the first and only video we have of Elijah Thomas crying and with out tubes hooked all over him. This is the video that shows the first minutes after Elijah was born and in it you can hear Ron speaking to how amazing his little boy is. It is hard for us to watch this video and see how Elijah’s little life went but I feel it is important to show that he looked like a healthy baby with a bright future ahead of him. The tragic fact is he wasn’t.

Team Elijah rocking their red!

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Congenital Heart Defect:  Facts & Statistics

♥  Congenital heart defects are America’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.

♥  This year almost 35,000 babies will be born with a congenital heart defect. 3,500 of them will not live to see their first birthday.

♥  91,000 life years are lost each year in this country due to congenital heart defects.

♥  The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

♥  Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.

♥  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.

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

♥  There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

♥  In the U.S., 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.

A lot of research has been done and relayed onto expecting mothers in regards to preventing CHD. I know for a fact with Elijah I did everything possible to prevent this horrible disease and  still Elijah was born with a CHD, one of the most severe forms HRHS. I took my Folic acid for three months prior to conception as well as my prenatal vitamins, I cut caffeine and soda out of my diet, I do not smoke, and rarely drink alcohol, and never do once I am expecting, I exercised and our families have no history of this defect, yet we were given Elijah. I believe God sent him for a reason, as I fully define what that reason is I will try my hardest to help fight CHD as well as find a cure for this horrible disease that is the #1 cause of birth related deaths in the United States. Tomorrow is national wear red for Heart Disease day and I hope you will help bring awareness as well as I to help stop this disease.

Elijah lives through our family as the voice to help others so they don’t have to experience the pain that comes along with having a child with a CHD and losing a child. Elijah has brought people together in love and support, he has brought people back to their faith, but his life still can do more. I am open for ideas on how to help fund raise for this over looked disease. If you have Ideas or would like to help please contact me.

Elijah, we love you and miss you everyday! We never stop thinking of you!

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Team Terariser in full effect sporting their red Ribbons for Baby E!

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Team Kingsley!



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3 responses to “The sweet face of Congenital Heart Disease

  1. Thanks for sharing. I do work with March of Dimes for very similar reasons. It gives meaning to their short lives and their spirit does live on. I couldn’t bring myself to watch the video. I’m about 2 weeks away from the 1 year anniversary of the passing of my sweet Gabriel and I’m just too emotional these days. I didn’t think I could handle it. However, I will wear red in your honor tomorrow. Thoughts and prayers with you…
    Rebecca A

  2. He is beautiful. I lost my son to heart defects at three months old. His name is Corbin and we named WV’s pulse ox bill after him. Thank you for spreading awareness. If you would like, here is Corbin’s story: Heart hugs!

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