5-year-old Aubree Spence is the Heart Hero of the 2020 Virtual Capital Region Heart Walk on June 7. Her mom, Jess Spence, shares Aubree’s story. You can meet Aubree during the opening ceremonies of the Heart Walk, found at our Facebook event page.
Aubree was born with a rare congenital heart defect (CHD)call Truncus Arteriosus with a Ventricular Septal Defect. This means that the single large blood vessel failed to divide during development, leaving Aubree’s heart with one artery carrying blood out of it. CHD happens in 1 out of 100 babies and the American Heart Association is in this fight with us to help spread awareness about congenital heart defects.
I knew early on in my pregnancy that Aubree had a heart defect. Since I have lupus, I was closely monitored during my pregnancy, because I could have put her into complete heart block. We were lucky that didn’t happen.
On September 30, 2014, Aubree was born, weighing 6.5 lbs. and was 17 inches long. She wasn’t breathing, and the doctors and nurses took her right away. The medical team worked on her for several minutes and finally we heard a cry. She was taken to the NICU at Albany Med, where Dr. Steven Kamenir, her pediatric cardiologist, confirmed that she has Truncus Arteriosus Type 1/ VSD. She stayed in the NICU for a week. She was closely monitored from her own home until It was time for sure. She stopped thriving and went into congestive heart failure.
On October 16, 2014, she went in for surgery at Albany Med. The surgery took 8-plus hours. Dr. Neil Devejian, the pediatric cardiac surgeon, was able to repair the defects but Aubree came out of surgery in 3rd-degree heart block. Then it was a waiting game to see if she was going to come out of heart block. Her tiny little heart fought and fought against the pacemaker. By the 14th day, she went into 1st degree heart block and she did not need a pacemaker. She remains in 1st degree heart block with no medicine and has a very big systolic murmur. She will have to have more repairs in the future.
It’s been a bumpy road. Not only did she have heart surgery at 16 days old, she has had other surgeries not related to the heart as well. She is the strongest kid that loves life to fullest. She doesn’t let anything keep her down and never complains!
I became involved with the American Heart Association because they gave Aubree and me strength and support to get through it all. The American Heart Association is always raising money for research for kids like Aubree and heart disease. Heart disease is the number one killer and they are always raising money for life saving research.