American Heart Association - You’re the Cure
WELCOME! PLEASE LOGIN OR SIGN UP

LoginLogin with Facebook

Remember me Forgot Password

Be the Cure, Join Today!

  • Learn about heart-health issues
  • Meet other likeminded advocates
  • Take action and be heard
SIGN UP

Born with Only Half a Heart

by Kacie K. on Monday, February 4, 2013

Congenital Heart Defect...words I had never heard before I was 20 weeks pregnant with my daughter. Gretta Joy is a 5 year old survivor of Hypoplastic Right Heart Syndrome. What is that you ask? It is a critical heart defect (CHD) she was born with that requires a series of surgeries as a child. Basically she is walking around with half a heart in her chest. As a woman this was devastating to me to think my precious little girl wasn't complete. She had ten fingers and ten toes but she was missing something that can't be seen by the naked eye.

Gretta had her first surgery when she was 10 days old. An infant’s heart when they are born is the size of a walnut and my little girl’s was only half that size. There is something about handing your child off to someone and trusting them to "fix" her—a feeling I just can’t explain. Although she will never be "fixed" she with always live with her her heart defect. She will not go into remission or have it removed. Gretta went on to have three more surgeries, not the two that she should have had, along with 4 heart catheterizations.

To watch her play you wouldn't know she has half a heart, rather you would have to pay close attention to how she plays and how she breathes. My sweet little girl has had her ups and downs in her CHD journey and scared us on a number of occasions. Today she amazes her father and I daily with her accomplishments. 

Congenital heart defect awareness week is February 7-14. This is the time of year we share our stories more than normal. We want people to know that approximately 1 out of 125 children are born with some form of CHD. More children die from CHDs every year than from all childhood cancers combined. Sharing my story and sharing a few facts is the best way I know to help out the CHD community. 

To help support pulse ox testing please go to our Action Center and send a letter to your Legislator asking them to support pulse ox testing.

 

Blog content provided by Valerie King, mother of CHD survivor Gretta, and a NC You’re the Cure Advocate. Valerie is also the lead coordinator of the Mended Little Hearts Tinman Club of Winston-Salem, NC.

Leave a Comment

Comments (6)

  • Such lovely words Kim, thanks for sharing your experience with Valerie.  We appreciate your passion for our cause!

    — Kacie K.

  • Kim:  what a power testament to Greta and Valerie.  I agree, thank you Valerie for all you do!

    — Elizabeth V.

  • I believe that Gretta was placed on earth to not only be the apple of her family''s eye but also to promote awareness of CHDs and to help others the same way she helped my 4 year old daughter come to terms with her new "zipper" that she has just received. Because of Gretta, our daughter proudly wears her scar and is eager to tell everyone around her how brave she is. It is my hope that both she and Gretta can take on the world and continue to talk about CHDs. Thank you Valerie for being there for me and for sharing your daughter and your story with the world!

    — Kim R.

  • Thank you Valerie for sharing your passion with us and Greta''s story.  This year You''re the Cure NC - you can make a difference for all NC babies by being an advocate for congenital heart defect screening using pulse oximetry.  Go to the action center and take action today!  Your lawmakers need to hear from you.

    — Elizabeth V.

  • Wow - very powerful, Valerie.  Thank you for sharing!  

    — Keltcie D.

[+] Comments