Madison Juniper was born in June of 2022 with multiple complex congenital heart defects. She has a unique and rare combination including complete atrioventricular septal defect (AVSD), transposition of the great arteries (TGA), double outlet right ventricle (DORV), pulmonary stenosis and an inferior vena cava (IVC) anomaly. Due to these defects, her heart formed without developing the walls necessary to create her four heart chambers. She had one common valve across her entire heart. The two main arteries – aorta and pulmonary artery - entering her heart were in the wrong positions. This anatomy resulted in DORV - since both of her great arteries rose from the same ventricle. Her pulmonary stenosis affects her main artery as well as the smaller branch of arteries responsible for pumping blood to her lungs. At 11 months old, her IVC was confirmed to be entering her heart through the wrong atrium.
At 2.5 weeks old, Madison endured her first open heart surgery at Albany Medical Center and was able to go home at 6 weeks old. Her first year of life was spent fighting and trying to grow. At 12 months old, we traveled to Boston Children’s Hospital for her biventricular repair – a repair that Boston is widely recognized for The amazing medical team at Boston Children’s developed a plan that included multiple surgical fixes to try to reroute her heart and create her four chambers. The repair was a success and Madison was able to come home after just 9 days.
Since Boston, Madison has been a thriving toddler and we are so grateful. It is because of the ongoing research and medical advances that Madison is able to be with us today. She will always need cardiac care and will need more surgeries in the future. Congenital heart defects are a lifelong fight and we will continue to spread awareness and raise funds for research.
We are thankful for everyone that participated with us in the 2024 Capital Region Heart Walk and look forward to raising more and continuing this tradition of celebration Madison and all other CHD families.
