Thursday, February 14, 2013

CHD week 2013

I know it's been quiet on the blog lately, but there's really not been a lot going on in the Khan Household. But I definitely wanted to share the fact that today is CHD (Congenital Heart Defects) awareness day, and the end of CHD week. I've shared many times why I care about this. But a refresher couldn't hurt:
  1. Congenital Heart Defect (CHD) is a malformation in the heart muscle present at birth.
  2. 2 million Americans are living with CHDs
  3. Each year 40,000 more US babies will be born with CHDs.  8,000 of them won’t live to see their first birthday
  4. Each year over 1,000,000 babies are born worldwide with a CHD.  100,000 of them will not live to see their first birthday.
  5. CHD is the most common and most lethal birth defect–both in the USA and throughout the world.
  6. The American Heart Association gives less than one penny per dollar raised to fight CHDs.
  7. 1 in 100 babies has a heart defect.  CHDs are as common as autism, but receive less research funding.
  8. 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood
  9. In the USA, twice as many children die from CHDs each year than from all forms of childhood cancer combined.
  10. Congenital Heart Defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
  11. More than 50% of all children born with congenital heart defects will require at least one invasive surgery in their lifetime.
  12. CHDs are the #1 cause of birth defected related deaths.
  13. In the last decade, death rates for congenital heart defects have declined by almost 30% due to advances made through research.
  14. The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion per year.
  15. There are more than 40 different types of CHDs.  Little is known about the cause of most of them.  There is no known prevention or cure for any of them. 

Bilal is my 1 in 100 baby, with a potentially serious heart defect called Tetralogy of Fallot. After surgical repair at a young age, we are blessed that he is thriving. That isn't always the case. Many children face a life full of procedures, tests and multiple open heart surgeries. In our case, Bilal has been cleared to see the cardiologist every two to three years. But the key point is, follow up must continue throughout life, ideally with a cardiologist who specializes in congenital heart defects, not just any adult cardiologist.

Screening is simple, with an inexpensive, non-invasive device called a pulse oximeter. Hospitals have them already, they just need to be used in the right setting. It may help detect a defect in a newborn, that had not been picked up prenatally. Not all defects can be picked up this way, in fact, Bilal had a normal pulse oximetry result, but it still has the potential to help detect defects before a newborn leaves the hospital with his or her family. Lives can be saved with early detection, because it can lead to early treatment. If you want to learn more, click on any of the links in the right sidebar. You'll find a wealth of information.

And of course, a cute pic of my 1 in 100:


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