This week is Congenital Heart Defect (CHD) Awareness Week. The thought never entered my brain (16 months ago) that I'd ever have a personal connection with heart health and awareness, aside from Adam's job at the Heart Hospital. We'd had three very healthy little boys and had no indication that our fourth child would be any different. But she was.
As I've researched, read stories and learned a lot about heart defects (which are the #1 birth defect) I've heard a lot of things that I never knew before. CHD is the most common defect in the U.S. and the #1 cause of birth defect-associated with infant illness and death. During my pregnancies I read all kinds of books and magazines on what to expect during pregnancy and things to be aware of with your baby but I don't remember ever reading anything that talked about heart defects and what to look for, and with it being the #1 birth defect, you'd think I'd have seen something about it somewhere! In the articles I've read (since learning of Ava Jane's defect) I hear a lot about Pulse Ox and how that screening saves lives. That simple test can give great indication to things that might not be quite right with your little one. So if you or someone you know is pregnant, have them ask for a Pulse Ox screening before leaving the hospital. It could save a life!
Not all defects are found before birth, Ava Jane's was not. Even after delivering her, Ava Jane passed all her newborn screenings and they sent us home just like they'd done previously with each of her three older brothers. We went to her one week check up and her 1 month visit thinking all was well and good. She was growing, she was sleeping A LOT and was a super easy baby. She showed no signs or symptoms that other heart babies usually exhibit (having bluish tinted lips and nails beds, shortness of breath, easily fatigued or rapid breathing). Now, looking back I think her "easy demeanor" and "great sleeping schedule" may have been a couple of signs that we just didn't pick up on since we had no other indications. I don't even know if they did a pulse ox test on her in the hospital, so I don't know if that screening would have been an indicator for us. But what I do know now, is that if they'd done a four extremity blood pressure screening as a newborn in the hospital we would have known immediately, what took us 2 months and having to catch RSV to finally reveal, that she did in fact have a Congenital Heart Defect! When they first did the 4 extremity blood pressure readings (taking bp in both arms and legs) at Children's it was obvious right off the bat that there was a significant problem, they couldn't even get readings from her legs because there was hardly a pulse in her femoral artery!
What Ava Jane had is called COA (Coarctation of the Aorta). Coarctation of the aorta comprises 5-8% of all congenital heart diseases, occurring 2-5 times more often in males than females. In the females that Coarc affects, 50% of the time the females also have a chromosomal defect called Turners Syndrome, thankfully, that is not the case for our Ava Jane.
You can read some of her heart story here and here.
This is what she looked like when we saw her for the first time after surgery.
This is what she looks like now! God is so good!
I wish that I had known more about heart disease and congenital heart defects, maybe then I wouldn't have been so shocked by her diagnosis or completely flabbergasted at how many children suffer daily in the Cardiovascular ICU at Children's. Truly, it is staggering the number of kids who struggle with these defects. I was stunned by the fact that each of those CVICU rooms stayed perpetually full when I had not even been aware of how prolific heart disease and congenital heart defects are! I think just spreading the word on what heart defect symptoms look like and the fact that they do exist in 1 out of 100 babies that are born, would be extremely helpful. So that's why I'm choosing to blog about it today, and why we're partnering with the American Heart Association's Heart Walk and Red Tie Society. We've met our fundraising goal, but would you consider helping us double that amount? We have 71 days until the walk, we'd love to have you join us, just click on the link above and you can donate and sign up to do the walk along with us!
Maybe, just maybe, our involvement, can help to continue raising awareness as well as funding critical research to help find the causes and cures for these wide spread heart problems.
If you or someone you know is pregnant tell them to ask for a Pulse Ox screening. Not all hospitals do them, its a simple, painless screening that truly could save a life. Make sure and ask for it!
Here is a great site on Congenital Heart Defects and Pulse Ox info.
Here is the site for Congenital Heart Defect Awareness.
Here is a great site that shows the polices and progress on tests and newborn screening in your state. On the site, you can click on each state for more details.
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