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Most people know that February is American Heart Month. But did you know that within February is also CHD Awareness Week?
Each year, an estimated 1 in 100 babies are born in the United States with a congenital heart defect; CHDs are the most common birth defect and the number one cause of death from birth defects during infancy. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. This is due in large part to the lack of awareness most people have about congenital heart defects.
When you see those two little lines on the home pregnancy test you are thinking about morning sickness, labor, diapers, breastfeed or formula, will I make a good parent? No one ever imagines that their thoughts would be consumed to echocardiograms, cardiology visits, medicine schedules, surgery, and the endless thought "will my child die".
We lost our 3.5 month old daughter, Allison Grace, to complex CHDs on August 13, 2002. We endured 32 days in the Lutheran General Hospital NICU in Park Ridge, Illinois, endless doctor visits and watching our little girl fight through open heart surgery at 3 months old. We have lived through the horrible nightmare of burying a child, had our living children lose their innocence and endure the harsh realities of life at 3 and 6 years of age and somehow have managed to remain a family through it all.
We are just one story in thousands that need to be told. There are others, like us, who have lost children to CHDs. Some have children that have simple defects that may or may not need surgery, while others have children with complex defects that will need to endure several surgeries and years of medicines and doctor visits.
February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients.
Help me honor families of children and adults with congenital heart defects and the professionals who work with them, and to help remember the memory of lives lost.
So what can you do to help?
- If you blog, please make an entry helping to raise awareness. You can even link to this entry.
- Place a button on your blog for the month.
- If you are looking to give to a charity, think about donating to one that supports CHD research, such as the Children's Heart Foundation.
- If you give to the American Heart Association, put "Zachary Brooks Foundation" in the memo designating that your funds will go to a foundation set up specifically for CHD heart awareness.
- Wear read on February 14 to remember those who are affected by CHDs.
- And if you have children, hug them a little tighter and thank God for the miracle and wonderful gift you have been given.
16 comments:
you and Allison will be in my thoughts over the next few weeks. I am actually attending a birthday party (60th) in February for someone who has, or could easily buy, anything he wanted. I was thinking to make a donation to charity in his name in lieu of a present. Now I know just where to donate :)
Gentle thoughts AJ & as always, I admire your strength! I love that picture of Allison, so angelic! xo
:hug: You've been linked. I also swiped a copy of your avatar. :hug:
You have my hugs as well. My good friend also lost her daughter to a congenital heart defect.
I'll be posting the button on my blog.
My eyes are filled with tears for you, Alexis. Hugs to you and your family as you miss sweet Allison.
She's beautiful! I'm sorry for your lose. It is not easy. I bet our girls are together in Heaven, playing right now.
Shannon
As always, thinking of you and sweet Allison.
Love,
Val
I did not know about this Alexis. Wow! I will definitely be posting this on my blog, and you'll be in my prayers!
Alexis...I don't have a blog but if it is ok I'd like to put a link to this on my-myspace page. I will wait till I hear from you to make sure it's ok...I think of Allison and Luke often. Dawn from SN
{{hug}} Thinking of your little angel and you. {{hug}}
Oh, sweet baby Allison. Such a beautiful picture!
Your family is in my thoughts, Alexis. :hug
You and your family will be in our prayers as we also lost our daughter, Heather to this disease. We will continue to pray for your strength.
What a beautiful little sweat pea she is. Thank you for this post and for introducing me to heaven's most precious little angel.
Alexis,
I had no idea. I am a nurse who specialized in Cardiac issues for 18 years.
My heart and love go out to you. May grace rain abundantly on you and your family this month!
Thinking of Allison Alexis, Always..
(((hugs))) I will definitely add it to my blog(s)!!!!! Thinking of you!
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