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.
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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.