My daughter, Tessa, was born with a congenital heart defect called Atrioventricular Septal Defect (AVSD or AV Canal). We learned of her heart problem at a Cardiology appointment when she was 5 days old after her Pediatrician heard her heart murmur at her well-baby checkup. We were devastated; we had never really heard of problems like this and left the Cardiology office frightened. We desperately wanted to speak with someone who had been through this before, to help us understand we could get through her open-heart surgery we had to face 3 long months later, but Tessa's Cardiologist was unable to direct us towards any support groups here in Colorado Springs, Colorado. We luckily were able to find a family to speak with about our concerns and what to expect during the surgery, but it was due to total luck (through a friend of a friend type deal).
Tessa had her surgery at the Denver Children's Hospital in June, 2008. She did remarkably well and is "free to become an Olympic athlete, if she chooses to do so," her Cardiologist tells me. The whole experience was terrifying, but we got through it. We feel the reason we had to go through this is because we need to help others get through these open-heart surgeries. We want to provide support to those in our area who feel the need to talk to someone who's been through this before, as we were desperately seeking before Tessa's surgery. Please feel free to leave a comment with contact information and we will be in touch.
