Joshua 3 days oldThis week is Congenital Heart Defect Awareness week. CHD's are incredibly common, however, unless you know someone with one, you probably haven't given it a second thought. This is because of the limited media exposure CHD's get. So this week, as a mother of child who was born with one the the most serious heart defects, I'll do my part in spreading awareness.
Not so fun-facts:
*CHDs are the #1 birth defect & #1 cause of infant death related to birth defects.
*1 in every 100 babies born will have a CHD
*1 in 10 of those born with a CHD will have a fatal defect.
*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.
*Causes for CHDs are still being studied. It is said that both genetics and environmental factors can play a role.
*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.
*Only about 30% of the children who need a heart transplant receive one in time.
*About 40,000 units of blood are used daily & only about 5% of adults who can donate blood do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.
Two years ago this week was simply the week of Valentines day. Now it is a time when I am very reflective of the journey we've been on with Joshua & his heart. Joshua spent his 3rd day of life, his heart stopped, laying on an operating table as dozens of people re-built his grape sized heart. He spent 3 of his first 6 months in the ICU. At 4 months he had his second open-heart surgery. While we have been incredibly blessed that Joshua has done so well this far, it has not been easy. He will face his third open-heart surgery within the next 2-3 years. At some point he will need a heart transplant. Help spread awareness! Heart defects don't discriminate...I certainly never would have thought that we could have a child who was less than healthy. Also please, if you are not an organ donor consider becoming one. If the thought turns you off, take a look at little Owens blog. He is in need of a new heart.
The medical world has made huge advances over the past several years, and the hope is that this will continue! With proper awareness comes proper funding of studies, research & so forth...please spread awareness!
Joshua today
4 comments:
Those figures are so hard to believe.
I guess you don't really think about CHDs until you know someone with one. When you are lucky enough to know these kids (and adults) you realize how special they are.
I think of how lucky we are family and what he has done for us. I'm sure all these kids are just as incredible. I am biased...he says my name and is just too darn cute!
Wow...the facts are shocking!
Hope you don't mind, but I spread the word on my blog by essentially copying and pasting this post.
I really don't understand how this topic hasn't gotten more media attention. Hopefully that changes in the near future!
I don't know if you remember me (Roseville 2nd Ward), but I found your blog by accident. I am touched by your story, and my heart goes out to you and yours. I can't imagine going through what you are, and I am amazed at your faith. Thank you for sharing your amazing story.
Megan Boden Kaze
Allison,
Thank you for your kind comment. It feels so good to network with families that just get it; that understand. I loved this post and am going to share some of the info on my blog as well--I hope you don't mind. It's wonderful to see your son doing so well. I look forward to staying in touch.
Mindi and McKay
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