Tuesday, February 12, 2013

Day 6 - Family Support

Did you know?

1.  "More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime." (http://www.childrensheartfoundation.org/about-chf/fact-sheets)

2.  "The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time." (http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/TheImpactofCongenitalHeartDefects/The-Impact-of-Congenital-Heart-Defects_UCM_001218_Article.jsp)

3.  One study, entitled Family Stress, Perceived Social Support and Coping Following the Diagnosis of a Child's Congenital Heart Disease, concluded that "findings provided evidence for the theoretical and empirical significance of perceived social support as a predictor of family coping. Further, these findings suggest that perceived social support is a factor influencing the resiliency of relatively high-risk groups of families who have a child with chronic illness." (http://www.ncbi.nlm.nih.gov/pubmed/12100663)

All that to say - being the parent of a child with a chronic illness is HARD, and it helps to know that people care.

Take action!

Show a heart family that you care. There are many ways to do this - whether it's creating a batch of cards and delivering them to your local pediatric cardiac unit, or donating time and/or supplies to a support group focused on children with CHDs.  

If you personally know a family who is facing a CHD diagnosis, you can never go wrong with giving the gift of presence.  And less is, often times, more.  One of the best things anyone said to us during Ethan's early days was a simple "I love you", and some of the best visitors were those who sat with us in waiting rooms without needing to utter a single word.

If you would like to give tangible items, however, here are a few of my favorite organizations.  I'd love for you to consider supporting their individual missions!
"Hope for BraveHEARTS is a non-profit organization dedicated to helping fund research for Congenital Heart Defects, supporting those affected by CHDs, and raising awareness.  Along with funding research, Hope for BraveHEARTS provides BraveHEART Baskets for children from ages 1 to 10 who are recovering from heart surgery at the Medical University of South Carolina."  

Monetary donations can be made through PayPal, via their website. 
"Sisters by Heart supports newly-diagnosed HLHS families by providing specially-designed care pacagkes and a supportive network of HLHS families. We offer comfort and hope for our warriors and their families...one precious heart at a time."

Donation information can also be found on their website.

3.  The Pediatric Intensive Care Family Advisory Council (PICFAC) at Duke Children's 
We are a group of families whose children have been cared for in either the PICU or the Pediatric Cardiac ICU at Duke.  Our mission is to help foster an ICU environment that is family-centered, and to support families who currently have children in either unit.  A list of needs can be found via our Target Wish List.

Also, if you live in the Raleigh-Durham area and you are the parent or family member of a child with a CHD, please consider joining our local support group, Triangle Mended Little Hearts.  This is the local chapter of the Mended Little Hearts national organization at Duke Children's, and we are a support program for caregivers of children with heart defects and heart disease.

Thank y'all for loving us well.

Tomorrow's topic: Research

Previous topics for CHD Awareness Week - 2013:

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