Saturday, February 14, 2015

Spreading awareness for CHD (congenital heart defects)

  If you are Facebook friends with me you know about this week. February 7-14th is Congenital Heart Defects Awareness week.February along with Black History month is also Heart month. As we talk about love and see hearts all around us we are reminded of Hearts and some are broken ones. As
seen in previous posts my son was born with several heart defects and still fights CHD with every heart beat he takes. This is something that was unknowingly thrown into my life with a newborn. So this is something I'm passionate about. Here are some facts about CHD....

  • 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.
  • Research Allocations & Impact

    • Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
    • 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 underappreciated global health problem.
    • In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.
  • Via ... 
Do these facts surprise you? They surprised me too. When I was pregnant I didn't hear or know of anything about CHD yet 1-100 babies are born with them. I had no knowledge that my baby had anything wrong with him till after he was born even after having the normal routine ultasounds. After Shane's birth his cardiologist even looked at the ultra sound videos and couldn't see anything. Some people are never diagnosed because they go undetected. Most however that are diagnosed as said above will have major Open heart surgery to repair it. In Shane's case he will have multiple surgeries throughout his life.  
The CHD road not only affects the person itself but the families surrounding them. Its a long hard road and doesn't stop at just heart surgeries.  Here is a short version of my sons Shane's Story.

Shane 8 days old before first Heart Surgery

Shane 3 m old After 2nd heart surgery
Shane recovering in hospital
 At 8 days old the day after Christmas our precious Shane stopped eating and breathing weird, as first time parents we were very unsure of what was normal. We decided to take Shane to the ER around 2am. When we arrived his body temp had dropped to 94 degrees, they couldn't read any blood pressure and immediately was put on oxygen. Within a half hour we were told he needed to be life flighted to primary children's hospital. Shortly after that he was put on the ventilator because he no longer could breathe on his own and his body was very lifeless. When we got to Primary's he was diagnosed with two holes in his heart(ASD,VSD) a pinched Aorta (Coarctation)right outside of his heart. He was also diagnosed with left ventricle non compaction cardiomyopathy a poor pumping left side of his heart. Shane has endured two heart surgeries and barely missed being listed on heart transplant list. Later on Shane was diagnosed with a bicuspid aortic valve leak (BAV) because of this leak his heart will need multiple valve replacements (open heart surgeries) throughout his life. As doctor projects the first before he is twelve.
Every time Shane heart beats it is fighting. Our story is just 1-100 born every 15 seconds. Not only do we endure heart surgeries and countless doctors appointments( that are an hours away) but most CHD kids endure, feeding issues, physical therapy, developmental delays, ENT oxygen dependency, and more susceptible to sickness .As is mostly the case in Shane's life. Help spread CHD awareness. 

There is a GO RED awareness going around to change your facebook profile picture to help others feel free to choose any of these pictures below. :) Or google CHD Awareness pictures.:) 

 Lets  get the word out about these defects. So Change your Profile picture to Red or a heart. So we can spread Awareness.
One of many echos done
Wearing Red for my Warrior

 Every day Research and medical science is evolving and there are things being done today that were not even known 20 or even 10 years ago. If you would like to donate for research in discovering more about these defects and finding out why... you can donate here.  This organization donates funds for research and helps families suffering with CHD.  

Monday, February 9, 2015

Post Tonsil/Adenoid Removal Update

Shane had his follow up with his ENT today at Primary's. It's been about 6 weeks since his tonsil/adenoids and vocal chord injection. The doctor said  it all looked like it healed well. We also discussed the improvements we have seen in Shane since the surgery. There have been lots! He hasn't been having frequent gasping episodes, he breathes normal when he sleeps, and has been sleeping better as far as quality of sleep it seems too. Shane also hasn't been coughing after everything he drinks. Shane also doesn't sound so nasally and congested all the time now. We haven't noticed any difference of volume of his voice which was a question, but we are not concerned about that at this point. So the question is now are some of these improvements because of tonsil/adenoids removal or vocal chord injection? The vocal chord injection only lasts around 5 months so if things start coming back then we know it' was improved because of the injection. If things start coming back then he said they will look into a nerve vocal chord surgery through Shane's neck that will be a permanent fix. So we will see what time will tell. Our next appt is in July.

 We also met with genetics last week this was the first time in 3 years since we saw them last. Shane has a duplication of the 16th chromosome so they want to see for study purposes if any things Shane possesses are related with this duplication. Shane has some of the characteristics  related with this duplication and as he developed other things may "occur" that they see with duplication. We are not to worried about any of it but I think it's fascinating and would love to get us tested too (nathan and I), but not in the cards right now.

As for us the Cox family...  We were all sick over valentines, all with different sicknesses. Shane started his special Ed preschool on jan 26th with the time I wanted.