Apr 2
adfrost17
adfrost17 , Posted on SUPPORT NETWORK Blog

Emersynn's Story

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It all started at our 12 week NT scan. The dr told us that our baby’s fluid behind her neck was elevated and we would need additional testing. I got blood work done to rule out down syndrome. At our 20 week anatomy scan, we found out that our little girl has a congenital heart defect (CHD). Shortly after this news, we were referred to a high risk OB and a pediatric cardiologist. When we saw the ped cardiologist, he broke the news that she does indeed have a complex heart defect which is VERY rare. Emersynn has congenitally corrected transposition of the great arteries (ccTGA), ventricular septal defect (VSD), pulmonary stenosis (PS) and dextrocardia. 1% of pregnancies end up with a baby with a CHD. Out of those one percent, .5 - 1% end up with ccTGA. That is how rare the defect is! Only 5,000-10,000 people in the US have this condition! 

The doctors thought Emersynn would need a shunt surgery within the first week of birth. Miraculously, Emersynn is currently 16 months and has not had any surgery thus far! She is defying all odds and doing SO amazing! She is growing well and hitting all of her milestones on or before (!) she is supposed to! Emersynn will require open heart surgery in the next year or two. This little girl amazes us more and more everyday! She is such an inspiration to everyone around her and is such a strong little warrior! 

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