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Emily, 2017

Emily, born 2017

After a pregnancy with no issues, a planned c-section and our beautiful baby girl born with a 9.9 apgar score we felt good about her health. Two days later when the cardiologist told us she had Tetralogy of Fallot, we were devastated. We thought this type of birth defect only happened to parents who did drugs when pregnant or were older when becoming pregnant. Reading stories like these on the Little Hearts website made the adjustment to our new reality much easier.


Emily was a “pink tet” although I came to hate the phrase. She nursed well and her gradient numbers were low enough for her to be treated like a typical baby. We planned her surgery for three months old and visited the cardiologist every week. Unfortunately, two weeks before the planned surgery, Emily started showing signs of a worsening condition. They moved up her surgery by a week and we kept a close eye on her. We ended up admitting her to the ER three days before the scheduled surgery because her breathing was shallow and rapid and was not nursing well.


Emily had her surgery with the great Dr. Kalfa at New York Presbyterian Hospital on March 16, 2018. Everything went perfect and she recovered over the next nine days.


The days immediately following the surgery were more stressful than we expected. The doctors told us she would be sedated and could not nurse for the first three days. During that time, however, there were many small problems like the breathing tube needing realignment and one of her heart monitors falling off. It was also painful as a parent to watch Emily wake up with a breathing tube in. She would become upset because of the circumstances and would try to cry. Because of the breathing tube, she could not make any noise so it was just a silent cry.


Now, she is a healthy, happy seven month baby. She hit all of her milestones on time and has not had any setbacks. Even her scar is not as pronounced as we expected. The whole experience has made us better parents and given us a new perspective on life. We are truly blessed.


Story by Emily’s dad, Eric – NEW YORK

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