Tuesday, February 7, 2012

CHD awareness week

Its strange just a month ago I wouldn't have thought about congenital heart defects, but all that changed very quickly. this week is CHD awareness week I wanted to post some of the statistics of CHD. I was rather amazed at how many babies have this, its so much more wide spread then I would have ever imagine. The following facts were taken from The Chirlden's Heart Foundation .

  • Congenital heart defects are America’s and every country’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.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • 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.
  • Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see 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.
  • 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.
  • 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.
  • Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
  • Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • The NHLBI has stated that Congenital Heart Defects are a serious and under-appreciated global health problem.
  • In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

After reading so many stories about children with a CHD that yes I am scared and the coming month, but also relived. Relieved that his defect was found  that he will receive the proper treatment he needs in order to live a normal life. Its unfathomable to even think of what could have happened to him if he was not diagnosed after being born. He very well could have ended up like Cora who died only days after she was born, in a way that any mother would have nightmares for a very long time. Her mother is know an advocate for CHD. She and others like her are pushing to make a test called  pulse ox. A test that can help detect a baby who is born with a CHD.  Not all hopstials do this test but they should

Lastly I realized that I have mentioned what little A's heart defect is but here is a picture of what it is drawn by another heart mommy who draws these pictures so people like me can show others what the defect is.

Ok one thing I believe I mentioned in an earlier post is what they call the PDA. It is something that goes away shortly after birth, its why right now little A is fine. it puts less stress on the heart, helps with blood flow. Now after he is born that will go away unless they take him and administer a drug. The main reason he will be taken to the NICU so quickly is so that remains open until his surgery. Keeps some of the pressure off of his little heart. Hopefully after his aorta is fixed and made bigger the pressure on his heart should go away and the left side which is smaller then normal should become more normal while the right should become smaller, which has gotten big due to back pressure form the left side of the heart.  Time is coming up fast and I am trying to remain calm over all of this. I haven't had as many break downs, I think I'm finally slowly starting to accept all of this.


Telisha Garris said...

With how under funded and under promoted this is, I am glad that your doctor feels confident that he will be among the successfully healed children.
Here for you, wishing I could do more to help.

Rhianna said...

Wow. There's so much here I didn't know. That illustration really helps it make more sense too.

Gotta echo Telisha. Wish I could do more to help but I'm here if you guys need me.I check my email dozens of times a day now. Even if it's just to vent or be distracted I really am just an email away. :)