As many of you know, I am the mother of two little girls born with congenital heart defects, known here as Superkid and Lily. I’m also an avid Pinterest pinner–I love collecting ideas and inspiration via Pinterest.
Those two elements of my life had absolutely nothing in common…until today! With your help, I’d like to help promote awareness of and advocacy for children (and adults) with congenital heart defects by founding a Pinterest board devoted to sharing the stories of families affect by the #1 Birth Defect. The board is titled, “The Faces of CHD – Congenital Heart Awareness Week Feb 7-12, 2012.”
I’m being joined in this effort by two other heart moms/bloggers, Stefenie of When Life Hands You a Broken Heart… and Becca of The Stanley Clan. They are incredible women with amazing stories, and you really should stop by their blogs and get to know them. Thanks for your help, Stef and Becca!
Now, let’s talk Pinterest:
Pinterest is a virtual bulletin board, where people can “pin” pictures with captions to be viewed and shared by others. Because pinned items can be viewed by thousands of people, pinning pictures and brief stories about your experiences with CHD will bring awareness to many people who might not otherwise have an opportunity to personally meet anyone with a congenital heart defect.
If we start pinning now, we’ll have a thriving board by CHD Awareness Week, Feb. 7-12, 2012.
If you already have a Pinterest account, you can find The Faces of CHD board here. If you would like an invitation to join Pinterest (it’s free!), please email me: triptoholland {at} gmail {dot} com.
UPDATE: Get answers to our most frequently asked questions HERE.
For those of you who have been affected by congenital heart defects, here is how you can participate, with or without a Pinterest account.
- Create a blog post that tells about your experiences with CHD. (Or you are free to use one that you already published.) Please make sure there is a picture of the heart child/adult in the post. Please link to the CHD Pinterest board in your post. (http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/)
- Send me, Stefenie, or Becca a link to your post in an email. Please include a brief (10 sentences or less) description of your experiences with CHD when you do. Make sure that description includes the heart warrior’s name, age, and heart diagnosis. You could also include number of surgeries, favorite hospital, etc. As the founders of this board, we reserve the right to edit your description if necessary. You’ll find our email information below.
- I will add one of the pictures from your post and your description to The Faces of CHD board. Pinterest members will be able to click on the picture and be directly linked to your blog post to learn more about living with CHD.
- If you do not have a blog, but would like to be included on The Faces of CHD board, please email me and I’ll provide an alternate means for you to participate. (triptoholland {at} gmail {dot} com.
- Feel free to grab a button below to add to your blog, so that your blog readers will learn about our awareness challenge and be able to participate.
Here are the email addresses for myself, Stefenie, and Becca:
Ruth: triptoholland {at} gmail {dot} com
Stefenie: jacks_rswl {at} mepotelco {dot} net
Becca: becca1612 {at} hotmail {dot} com
If you do not have an experience of your own to share, please show your support for those of us who do by pinning this post, viewing the Faces of CHD board, and repinning the stories you find there that touch your heart.
Thank you in advance for your support!
Here is my daughters pin….http://pinterest.com/pin/103934703870215347/
Thank you for sharing your experience, Shelby. I just pinned your sweet baby’s beautiful picture on the board. I know from experience how hard it is to have empty arms. My prayer is that as we all work to increase awareness, no more families will have to go home without their babies. Your little one’s short life truly has a purpose.
Great project! Here is the link for my contribution to the CHD board on pinterest http://khanfamilyoffive.blogspot.com/2012/01/chd-awareness-week-2012.html Feel free to share!
Thank you, Mina! Bilal is such a handsome little guy. Thanks for sharing his story with us. I just pinned his picture and story to the board, you can view it here: http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/
http://belleandthebabe.blogspot.com/2012/01/chd-awareness-week-is-coming.html
what a great project!! This is our Norah <3
Thanks so much for getting involved, Sarah! I just pinned Norah’s picture to the board–the picture with her zipper and the red tutu. (So cool, btw!) We really appreciate your willingness to share Norah’s story and help the world learn more about CHDs.
My husband’s story (TOF) can be found here. We’d love for him to be added to the Pinterest Awareness Challenge.
Here is the direct link and feel free to use the picture:
http://threekidsfouryears.blogspot.com/p/joes-heart.html
Farrah, thank you so much for your willingness to participate! I’m always so happy to get adult survivors on the board. It’s so great for those of us with little ones to read about the adults. Joe is now pinned. I wish you, Joe, and your family all the best.
Here is ours!! What a fabulous idea <3
http://ngreen114.blogspot.com/
Thanks, Natasha! I really enjoyed reading your plug for the Pinterest Challenge. Glad I’m not the only heart mom who has to have her Pinterest fix! Your cute little guy has officially been pinned.
Our Daughter Aine has TOF. She is doing very well for as sick as she was at birth. 9 months of fights & struggles & she is smiling, starting to laugh, working on sitting up and starting to enjoy life!
We would love to be part of CHD awareness week!
Nicole, I just pinned Aine’s picture on the board! Thank you so, so much for sharing her story with us. It looks like she is really working hard and will be sitting all by herself, soon. Congrats!
Matthew was born with an undiagnosed congenital heart defect. Because blood oxygen testing is not mandatory for newborns I almost took him home. I will forever be grateful to a very observant nurse who thought his color was different when she saw him 24 hours after he was born. He had transposition of the great arteries and an ASD (hole). He had a septostomy at 3 days old and open heart surgery at 10 days old. Read more in my blog about our journey.
I just pinned Matthew’s story to the board! I’m glad he’s doing so well. Thank you for participating in our awareness challenge!
What a great idea! Id be honored if you’d include Evies story. I just posted a long blog post at Stefanies request here…
http://seventhsmith.blogspot.com/2012/01/chd-awareness-post.html
Here is a brief description to include:
Evangeline is our fifth blessing from the Lord. She was born in January 2008 with an undiagnosed Congenital Heart Defect; Transposition of the Great Arteries. At 10 days old, she presented with respiratory distress. In the ER she crashed and a team of a dozen doctors worked through the night to revive her tiny body as it went into shock. After diagnosing her broken heart, she was Life Flighted to MUSC in Charleston for open heart surgery. She has since battled Congestive Heart Failure, Chronic Lung Disease, severe reflux, Failure to Thrive and auto-immune disorders. Her name means “Peace”, though her short life has been anything but! We sense that God is teaching us “peace in the storm” through her little life! She is our precious miracle and a testimony to the power of prayer and Gods gracious healing. This is the journal of her life and those who love her.
Thank you so much for sharing Evie’s story with us, Mandy! She has a pin, now.
Landon was diagnosed in-utero at 18 weeks with Tetralogy of Fallot. At a week shy of four months old he was rushed by ambulance to Wisconsin Children’s Hospital after a sudden and very scary decline. He did exceptionally well in surgery and recovery and now almost 6 years old is a fairly healthy, active boy. We’ve been blessed to have no restrictions or medications like other heart families have to deal with. We are still waiting for a pulmonary valve replacement in the next few years but taking it year by year.
Here is the link to my journal from the week of Landon’s surgery as well as his two most recent check-ups – http://amanda-page.blogspot.com/search/label/TOF Thanks for letting us share our story and for helping raise awareness!
Sorry – above should say *almost 6 years later* didn’t see and edit button
Amanda, thank you for sharing Landon’s story! He’s on the board, now. I’m so glad you had some pictures of him at his appointments–we have several pictures of kids post-op, but I think it’s terrific for other families to see an older child at a regular appointment. You can tell by his happy face that he does really well at his appointments–so nice for parents to see that are currently wrestling with their uncooperative toddlers at those same appointments.
Thanks Ruth! It was hard when he was younger and his doctor doesn’t feel that sedation is necessary…just lots of patience. Now he does great at appointments. We make it a special day for him. Even though his dad and I haven’t been together since shortly before I found out I was pregnant with him. We all go to appointments together and then go out for lunch and then to the store afterward for him to pick out a toy or prize of his choice. He knows he has a special heart and he’s proud of it and his battle scar.
Here is the link to my daughter’s blog http://www.sophiasheart.blogspot.com/
Love love love what you guys are doing it’s amazing!
What a doll! Sophia is on the board, now. Thanks for your support!
Here is my daughter’s story in short style.
https://pinterest.com/myluckystars88/chb-complete-heart-block/
She’s on the board! Thank you so much for being willing to share your story. It is going to make a big impact on someone.
Your welcome. Yes, I do know that it willmake a big impact on someone, just reading all those stories made me remember, ya know. Even though it as the short stories version, I still hope it helps out. I had to have so much faith in the Lord and the Dr’s. It was rough, but she’s here now and doing amazing.
What a great idea! I am new to Pinterest, but I’ve been a part of the CHD community since my son was born a little over 2 years ago. My little “boy of steel”, otherwise known as Owen, was born with a right aortic arch, a vascular ring, a bicuspid aortic valve, and a VSD. He is a stubborn little thing though… After a recent hospitalization, as he awoke from sedation, the first word out of his mouth (which was aimed directly at the nurse) was “DONE!”. He still struggles daily with feeding difficulties, and undiagnosed pulmonary issues, but he never slows down. He really is flesh, bone, and steel! I just updated my blog with more recent information on him: http://commongoddess.blogspot.com/2010/08/idiots-guide-to-owen.html
Owen is now on the board, and what a cutie he is! Thanks for participating.
This is my story. I would love for my daughters picture to be added,
http://thedancefive.blogspot.com/2012/01/congenital-heart-awareness-week-7-12th.html
We’ve got her on the board, now! Thanks so much for sharing Megan’s story. Darling pictures, by the way.