I've blogged a few times about the heart community that I've been following online - the babies born with congenital heart defects. I am so amazed by what medicine can do and by what these little fighters - some only days old - are able to overcome. I feel for the parents - I cannot begin to imagine the devastation when you are told something like your baby has half a heart (or any other CHD), the worry when they are born, the feeling of handing your baby over for open heart surgery, or the hope that they must feel as their little ones recover.
This past week, nine - NINE - members of this heart community suffering from Congenital Heart Defects have passed away. (9 - did you get that? Can you believe it?) They fought as long, and as hard, as their bodies would let them. They were different ages, in different stages of life, and suffered from different CHDs. I've been following the stories of two of them:
Ewan (www.team-ewan.blogspot.com) was diagnosed in utero with a severe form of Tetralogy of Fallots and other heart conditions (I don't know anything about the heart, so I apologize if I get this wrong); he had surgery and had to be placed on the ECMO machine (full life support) - They tried to bring him off of it a few times, but it was too much for his little body to bear - he was 2 weeks old when he passed away Monday.
Joshua (www.fierceandfiesty.blogspot.com) was diagnosed in utero with HLHS (only has 1/2 of a functioning heart) - He fought so hard and crashed multiple times, undergoing two open heart surgeries - he lost his fight this morning, at about 7 weeks old.
I know it's so hard to hear about these babies, and my heart breaks (daily) for these families. So why am I writing about it now?
I feel like everyone gives all of their attention to issues like Breast cancer awareness and other cancers. Don't get me wrong, I don't think any attention should be diverted from these issues - but just like people are aware of cancers, people NEED to be aware of CHDs and the effects of them. CHDs need the funding for research just like breast cancer or other diseases.
When I was pregnant, I had my anatomy scan, and I knew there was a possibility something could be wrong, but I never gave a second thought to the baby's heart - after all, we had seen/heard it beating numerous times during our prior visits.
But I'm struggling. It's a different struggle than these "heart moms" face on a daily basis. I'm struggling with how I, as a blessed mother of a heart-healthy daughter, can help bring awareness to the issue. It feels almost like they are in a different "world" because of all they go through when, in reality, we are all mothers fighting to do the best we can for our children - maybe they just have a little more of an "uphill battle" than others.
How can a baby who goes through open heart surgery at such a young age (many at least 3 surgeries by the time they're 2!) be called anything but a hero? And those heroes that lose their battle and return to the Heavenly Father anything but angels?
So, while it's so scary and gut-wrenching to read this stories, I beg you to read a few (Ewan's, Joshie's, or many others I can point you to) - if for no other reason than gaining awareness of the issue. Lives depend on it.
* If you're not ready for stories like Ewan's or Joshua's, I can point you to many, many, many heroes who have undergone the surgeries and are thriving - as well as some who have received a new heart from someone else's angel.
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