I've done quite a bit of "talking" on the blog this week, and I am all typed out. Now it's your turn! Today - Valentine's Day and CHD Awareness Day - I want to hear from you.
As my Facebook feed is filling up with notes of love and photos of roses, I want you to tell me something a little different this afternoon.
Today, I want to hear what you've learned over the past few days as it relates to the broken hearts that can't be made better with a box of chocolates. I want to hear what you've done, or plan to do, for the hearts that had to work a little harder than most to get out of bed this morning. I want to know who, out of all those people you love, you'll share this information with.
So tell me, friends ...
What have you learned? What will you do? Who will you tell?
Your dollars - OUR dollars - make a difference, and our children - MY son - greatly benefits from research discoveries!
1. Participate in local AHA programs such as the Heart Walk and Jump Rope for Heart. If you live in the Raleigh-Durham area and donate to the Triangle AHA office, you can rest assured that your money stays local and flows into research opportunities at both Duke and UNC.
2. Consider giving to the Children's Heart Foundation. In fact, it's easy to do so this month. Just take your child, niece, nephew, or neighbor to the nearest Build-A-Bear Workshop and choose to donate $1 towards CHD research through the Children's Heart Foundation. Last year, over $178,000 was raised!
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.
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
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.
Donate. I'll be honest with y'all. I've yet to overcome my fear of needles and donate blood myself. I tried once in high school, completely chickened out, and haven't tried since - not even after watching bags and bags of blood flow into Ethan's tiny, sick body. It's something I want to do - should do, even - and 2013 just might be my year. How about you? Find a donation opportunity near you.
1. "One study demonstrated that for every 700,000 live births, there will be 4,500 infants with CHD, 25% of these children will leave the hospital without a diagnosis, and roughly 30 infants will die from CHD before any cardiac diagnosis is made." (Wren, C., Reinhardt Z, Khawaja, K, “Twenty year trends in diagnosis
of life-threatening neonatal cardiovascular malformations.” Arch Dis Child Fetal Neonatal Ed., 2008 Jan 93(1):F33-5)
2. "Newborn screening using pulse oximetry can identify some infants with a
CCHD [critical congenital heart defect] before they show signs of a CCHD. Once identified, babies with a
CCHD can be seen by cardiologists and can receive specialized care and
treatment that can prevent disability and death early in life." (http://www.cdc.gov/ncbddd/pediatricgenetics/cchdscreening.html)
3. Pulse oximetry (PulseOx) screening is not able to detect all heart defects, but is likely to detect seven critical congenital heart defects (CCHD). CCHDs are heart defects that usually require surgery or catheter intervention in the first year of life. (http://www.cdc.gov/ncbddd/pediatricgenetics/cchdscreening.html)
3. "Of all newborns who present for an autopsy without an explanation for
their cause of death, nearly 40% will be found to have had congenital
heart disease (CHD) which was not diagnosed while they were alive." (Weber, MA, Ashworth, MT, Risdon, RA, et.al., “Sudden unexpected
neonatal death in the first week of life: autopsy findings from a
specialist centre.” J Matern Fetal Neonatal Med., 2009 May;22(5):398-404)
Know the signs of Congenital Heart Defects, and share them with the new moms in your life:
American Heart Month kicked off on February 1st with lots of people "going red" in honor of those affected by congenital heart defects and acquired heart disease. My Facebook feed and notifications went crazy on Friday with many of y'all tagging me in your photos and status updates - it seriously made my day!
I mean - really. How great does everyone look all decked out in red?!
Today, February 7th, marks the first day of Congenital Heart Defect (CHD) Awareness Week. Many states across the country, including North Carolina, have declared February 7th-14th as a time to raise awareness of the #1 birth defect; a time to educate, a time to act.
Over the next few days, I'll be blogging about six different topics as they relate to congenital heart defects - prevalence and diagnosis, pulse oximetry screening, blood donation, organ transplant and donation, hospital support, and research. Each post will contain a few facts (maybe you'll learn something new - I certainly have!) and at least one action item. I believe awareness and action go hand-in-hand, and my goal is to give us some tangible things we can do over the next several days.
Thanks to those of you who commented and linked-up back in January; I hope to read even morefunny stories this month! I'll keep the link-up tool open all month, so you'll have plenty of time to share.
How it works:
1. Write a post on your blog about something a child in your life
has said - funny, silly, cute, or profound! It would be great if you included a link back to Signs of Life so that others can read along and join in, too. (If you don't have a blog, feel free to leave your story in the comments section of this post!)
2. Enter the needed information in the link-up tool at the bottom of the post. Click "Submit Link".
Be sure to put the permalink (post-specific link) in the URL spot, and
not your general blog URL. Using the permalink will ensure that other
readers find your post! Remember: Those of you who view this post in a reader will need to visit the actual blog to see the link-up tool and linked blogs!
Now, let's laugh...
Ethan, my sister, and I were walking around the mall one afternoon after Jessi had given him a hair cut. Ethan stopped in front of one of those calendar kiosks and began admiring the Angry Birds and Hot Wheels calendars. He made up his mind that he really wanted the Hot Wheels one, but there was only one problem...
Joye: Well, do you have any money to buy it?
Ethan: Yeah, I do.
Joye: Really? Where is it?
Ethan: It's in your purse!
Nice try, kiddo! Of course, him not having money of his own is no problem at all as long as his Aunt Bubbie is around!
Then, there was this one a few days later as Jeramie, Ethan, and I were sitting around the kitchen table:
Ethan, digging into his ear: I have a wak in my ear.
Jeramie: A rock?
Ethan: No, a wak!
Joye: You mean wax?
Ethan: No, it's just one! .. A wak is a thing that lives in your ear, too. And when you put another one in, it's wax!
No worries, Ethan - the English language stumps us all sometimes!
Lucky #7 is the winner of the $50 credit to Minted!
Congrats, Mandy! I'll send you the promo code within a few days. Thanks to all who commented, and I hope everyone has a wonderful weekend! I'll be back on Monday with another link-up, so get those posts ready!