Our daughter Madison was born with several critical congenital heart defects. Her exact combination is extremely rare and we are so grateful that we had early detection to help prepare a plan for Madison.
Madison underwent her first open heart surgery at just 2.5 weeks old at Albany Medical Center. This life saving surgery helped increase blood flow to her lungs. The plan moving forward was to watch her grow, as doctors wanted her as big as possible before her next surgery. However, during her first year of life she had difficulties eating and underwent a second surgery at 4 months old for a gastronomy feeding tube (G-tube).
We worked closely with Madison's care team and she underwent a biventricular repair - open heart surgery - at Boston Children's Hospital two weeks after her 1st birthday. This major surgery rebuilt her heart from the inside out - for lack of better terms. Madison was born with complete atrioventricular septal defect (AVSD), transposition of the great arteries (TGA), double outlet right ventricle (DORV), pulmonary stenosis and her inferior vena cava entered the wrong atria. After an extremely long day, Madison's surgery was deemed successful, as the team was able to create, patch and reroute what they had planned. She recovered quickly and we were able to leave Boston to continue recovery after only 9 days.
Currently, Madison is 8 months post repair and thriving. She is working through her therapies to learn new skills and build strength. Madison will always need to be under cardiac care. More surgeries will be required in the future to keep her heart functioning properly. She will always need to take certain medications to help as well.
We are so thankful for everyone involved in Madison's care. Without awareness and funding, important research and advancements would not be possible. It is because of these medical advancements that Madison is here today, and we are forever grateful for that.
The American Heart Association and The Children’s Heart Foundation have joined forces to further lifesaving research into the world’s number 1 of birth defect.
This year we will be walking in the 2024 Capital Region Heart Walk and Run to celebrate the 100 years of the American Heart Association, help raise awareness for CHD and honor Madison.
