Life with a baby who has half a heart and Down syndrome

They told me that half of her heart did not fully develop (HRHS), and that she had a life-threatening severe coarctation of the aorta as well as Down syndrome. They could not tell me what her outcome would be. This news initially robbed the joy from my pregnancy until I made the decision to celebrate every second with her while pregnant in hopes my positive energy could change her outcome. She came out stronger and bigger than anyone expected. She had no complications with her 2 open heart surgeries that she had at 11 days old and at 4 months old.. The hardest part of her surgeries was dealing with the NG feeding tube that they placed after the first one. She wound up having it for 15 months and we had little support or guidance on how to wean her. She still needs a third surgery and there’s always a chance a heart transplant might be needed. While we wait, we want to raise awareness for congenital heart disease and Down syndrome. The silver lining in everything we have gone through has actually been the Down syndrome aspect. Most people don’t realize what Down syndrome is like until they become a family member or friend of a person with Down syndrome. This video will give others a glimpse of this silver lining.
If you would like to be a part of this journey and help raise awareness you can follow me on instagram at- graces_joyous_heart_journey or on my Facebook page: Marjorie Jean and Amazing _Grace_joyous _heart.
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#gracejoy #halfaheart #cutebabygirl #cutebaby #downsyndromelove #dslove #DSawareness #NIPT #chdawareness
#downsyndromebeauty #changetheworld
#happinessisdownsyndrom #artistmarjoriejean