Vivian’s Heart Story
| Told by her mother Erica.
Diagnosis: Hypoplastic Left Heart Syndrome  We were told that the defect was as severe as they come and we were sent to a pediatric cardiologist in town to discuss the defect further. I mostly remember just thinking “I don’t want this!”. I cried a lot. I blamed myself for any little thing I may have done to possibly cause the defect. I shut down and really didn’t know how to talk to people about it. Everyone wanted to reassure me that things would be fine, but it felt to me like they didn’t understand and were just trying to gloss over it. Then I realized that knowing early gave our little girl a little bit of advantage because we could learn about her defect and prepare for the surgeries and choose her hospital and doctors carefully. I joined online support groups and read everything and studied hospital statistics. We had many fetal echocardiograms to monitor her progress and we spoke with the surgeon who would be performing her heart surgeries. It was hard. Being pregnant is emotional anyway and I had vivid dreams about the heart surgeries and my fears. When Vivian was born, though, I was glad that I had the time during my pregnancy to research and somewhat come to terms with her diagnosis. I think about families who only find out about heart defects when their child is born and I don’t know how I could have handled that. Vivian is 3 years old this week and is thriving after 2 heart surgeries. She will have more surgeries in the future, but she is amazing and beautiful and has made me so much stronger as a mom and as a person. I have always been thankful that we learned about her defect early and we have been so grateful for each day she is in our lives. She has taught me to take each moment as it comes and not waste time being afraid of things in the future. It has been a hard road, but I don’t regret one step of the journey. |
~Erica, July 2009 |