Emersynn Frost

Emersynn was born November 2016 and is our miracle baby! She is doing absolutely amazing!

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 pediatric 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 this particular defect is! Only 5,000-10,000 people in the US have this condition!

A little bit about her condition: In ccTGA both ventricles (pumping chambers) of the heart are reversed. Fortunately, the arteries are reversed too, so the heart actually “corrects” the abnormal development, thus the name “congenitally corrected transposition of the great arteries.” However, ccTGA is a complex malformation in which the heart is far from being normal.

In a normal heart, the left-side pumping chamber (left ventricle) sends blood to the entire body. The right-side ventricle pumps blood only a short distance, to the lungs. The left ventricle is built to last longer than the right ventricle: 80 to 100 years if no other health problems exist.

In ccTGA, the heart twists abnormally during fetal development, and the ventricles are reversed: The stronger left ventricle pumps blood to the lungs and the weaker right ventricle has the harder chore of pumping blood to the entire body. The right ventricle is not built to last as long as the left ventricle. Emersynn miraculously didn’t need immediate surgery after she was born and it wasn’t until September of 2018 that she had a major open heart surgery called the double switch at 21 months old. 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! This little girl amazes me more and more everyday! She is such an inspiration to everyone around her and is such a strong little warrior!