CHD Awareness

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I added a few notes to this post… I saw them on another heart mom’s blog and loved her thoughts in supporting CHD Awareness week. She said I could share… Most of these thoughts are hers. (You can click here to visit her blog post and meet her darling son, Owen. ) These are simple things you can do to help support kids born with CHD and raise awareness in your families and communities.

  • Donate Blood – Kids like Sarah receive a lot of blood transfusions and blood products throughout their lives. You could organize a blood drive at work or in your community, or simply donate yourself.
  • Pulse Ox Testing – If you (or someone you love) are expecting, please ask for a simple non-invasive pulse ox test for your newborn baby at the hospital. This can be an early indicator of a heart defect in your infant. Because it saves lives, some states are now mandating pulse ox testing of newborns.
  • Sports Physicals – This isn’t discussed much, but I know we’ve all heard the sad stories of young, active athletes that collapse in the middle of a game, often because of an unknown heart defect. If you have concerns, you can request an ECG in addition to your child’s sports physical, and often times this could show if something is wrong with your child’s heart.
  • Organ Donation – This one is so very dear to our hearts right now… If you are not an organ donor, please think about it. One organ and tissue donor can affect the lives of up to 50 others. Talk about it with your family and friends. Make your wishes known to your loved ones. You can click here to register.
  • Raise Awareness – All of Sarah’s life, I’ve tried to explain to people in ways they can understand about CHDs, specifically Sarah’s. I haven’t been super active in this until lately, as I didn’t realize how many more kids there were out there like her. The hard part about CHDs is that even though they affect so many children, people just don’t understand that most of the time, even after surgery #5, their hearts aren’t really “fixed”. We need to talk about it. Really, it’s good for me. Ask questions, and don’t be afraid to share what you learn with others. To my knowledge, there are no celebrity endorsers for CHDs, no major events to raise funds, and no big funding source for CHD research and advancements. You probably won’t hear any big news stories, or read about a pharmaceutical company that has a new drug to fix a broken heart. There is no cure. So, as Owen’s mom so beautifully said, “as heart moms, we are doing what we can to support each other and pray that our doctors continue to find surgical advancements to improve the quality of life for our kids.”

Thank you for praying for Sarah, and for other kids like her. There are so many amazing heart heroes out there, living life to its fullest, and taking their struggles in stride. There are also a lot of parents with empty arms that were once filled with sweet little warriors of their own. CHDs affect lives. You can, too.

~Julia

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