Awareness Week: Day 2 & 23 Months Later

Today, February 8th, is not only the 2nd day of CHD Awareness Week, but it also marks 23 months since Ethan found his way into my arms. My baby will be TWO next month, y'all!

In celebration of his 23 months of life, I thought I would share 23 facts about Congenital Heart Defects. I'll start with a few general facts that some of you may already know, but then I'll move into more specific facts about Ethan's defect.

CHDs - An Overview:

1. A congenital heart defect is an abnormality in any part of the heart that is present at birth. Heart defects originate in the early weeks of pregnancy when the heart is forming.

2. 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.

3. Congenital heart defects are America’s, and every country’s, #1 birth defect. Nearly one of every 100 babies is born with a CHD.

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

5. The cost of inpatient surgery to repair congenital heart defects exceeds 2.2 billion dollars a year.

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

7. Children and adults with certain heart defects, even after surgical repair, remain at increased risk of infection involving the heart and its valves.

8. There are an estimated 2,000,000 CHD survivors in the United States.

9. For the first time, more than 50% of the CHD survivors are adults.

10. Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

11. Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

12. 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.

*Facts compiled from March of Dimes and The Children's Heart Foundation

Ethan's CHD - Pulmonary Atresia with VSD, DORV:

Photo (and descriptions below) courtesy of Heart Baby Home.

13. Pulmonary atresia: [pulmonary=having to do with the lungs, atresia=without openings] a complete blockage of the pulmonary artery (which carries blood from the heart to the lungs) caused by a missing or fused-shut pulmonary valve.

14. VSD (ventricular septal defect): [septum=wall between the chambers of the heart, ventricles=lower chambers of the heart] – holes in the inner walls of the heart allowing extra blood flow between the two lower chambers of the heart (ventricles). This causes the oxygen-rich and oxygen-poor blood to mix before leaving the heart.

15. DORV (double outlet right ventricle): [outlet=passage for exit, ventricles=lower chambers of the heart] – both vessels (aorta & pulmonary artery) carrying blood away from the heart come out of the right ventricle. (Normally the aorta carries oxygen-rich blood from the left ventricle and the pulmonary artery carries oxygen-poor blood from the right ventricle).

16. Out of all congenital cardiac malformations, it is estimated that Pulmonary Atresia with VSD occurs in 2.5-3.4% of the cases.

17. Ethan's surgeon fully repaired his heart at 3 days old with the Rastelli procedure. This involved closing the VSD and surgically connecting a valved conduit between the right ventricle and pulmonary artery.

Click to enlarge

18. Before his first open heart surgery Ethan's life was sustained by Prostaglandin, a drug that allowed his patent ductus arteriosus (PDA) to remain open. (This opening typically closes within hours after a baby's birth. Ethan's life depended on his not closing.)

19. Ethan's conduit will not grow with him. Replacing the conduit was the main reason for his 2nd open heart surgery at 6 months old, and will be the reason for his next one.

20. The successful Rastelli operation at 3 days old should provide Ethan a near normal existence well into his adult life.

21. The major complication of Ethan's Rastelli repair was complete heart block. This means the top chambers (the atria) do not have a pathway to communicate with the bottom chambers (ventricles). A pacemaker was inserted when Ethan was 11 days old to bypass this. It senses the intrinsic beat of his atria, and sends a signal to tell his ventricles to follow. It does not tick, he can be around microwaves, and it's actually located in his abdomen.

22. One half of a baby aspirin is all the medication it takes to keep Ethan's heart working like it should. However, he will be required to take prophylactic antibiotics before any dental treatments to help prevent subacute bacterial endocarditis (SBE).

23. As much as I would like to say it is, Ethan's heart is not "fixed". He has the jugular vein of a cow sewn into his heart; there's nothing normal about that. Because he doesn't show any outward signs of a defective heart (he doesn't turn blue or fatigue easily), it can be easy to think that everything is OK.

So, there you have it. Twenty-three reasons why we absolutely need to continue to raise awareness, which leads to funds, which leads to research.

Maybe one day there will be a fix. Maybe one day we'll be able to save our babies from surgery after surgery. Wouldn't it be great if there was no "CHD Awareness Week", because there were no CHDs?

I certainly think so, but we can't do it without your help.

Do your part. Donate. Dream big.