Friday, February 8, 2013

Congenital Heart Defect Awareness Week

As many of you know, Mason was born with a Congenital Heart Defect.  He was born with Atrial Ventricle Spetal Complete, and under developed heart valves. 

Mason being born with a CHD makes him 1 in 100..... Why 1 in 100? 
 *Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD

After finding out about Mason's heart condition, we knew he would need open heart surgery to save his life.  If we hadn't found out before he was born that he would need extra medical attention,  Things could have taken a turn for the worse.   We are thankful to our Drs , that we all knew what was going on with his heart, and knew what needed to be done to save his life.

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

 When we found out about Mason's CHD at the same time we found out he would have Down syndrome.  The CHD he has is actually common in children with DS.  That was one of the leading factors (before our amnio) that pointed towards him having Down syndrome. 

*Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities


Now here comes the shocking facts of Congenital Heart Defects:

* 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 

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

 ( Mason is lucky to have been able to have his heart repaired at 5mo old, after being in heart failure at 5wks old.  If he had not had his surgery, he would not be alive today.  He life depended on that 8 hr surgery. ( longest day of our lives).  He will have echocardiograms, EKGs, and Cardiologist visits for the rest of his life.  He heart may need another surgery when he is older ( were looking at around 12 or 15 yrs old ). 

*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

We do know that Masons type of  heart defect goes hand in hand with him having Down syndrome, but they do not know the actual cause of his heart not fully developing. 

 
 
* 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. 

As a Mother of a child with CHD, I often wonder why there isnt more funding, research, awareness, and public knowledge of CHD.   We knew nothing about CHDs, untill we were told that Mason had a heart defect.  Now we are making it our goal it educate as many as we can about CHD..... because the more people know, the more lives we can save.






 

3 comments:

  1. What a great post. You did a lovely job of incorporating the information with your personal story. So much more research could be so beneficial!

    ReplyDelete
  2. Great post! As a heart mom, I agree with every word you said! My son was 1 in 100 as well and sadly passed away from his defects. But I continue to advocate for CHD and pulse ox and I'm always happy to find another amazing heart mom. Hugs!

    ReplyDelete
  3. This is very interesting. Heart health is very important and something that we don't pay attention too enough. It is important to go to a good nyc cardiology expert every once in a while. Thanks for posting.

    ReplyDelete

We love to hear from you!