We knew before Erin was born that there was something wrong with her heart, we just didn’t know the extent of the problem. When she was one day old we received an in-depth education about how the heart works and what was making hers not function the way it should. Erin was born with Taussig-Bing Syndrome (double outlet, right ventricle) which means that unlike most people who have an artery coming from each side of their heart; Erin’s are both on the same side and one of them was closed up to the size of a pin hole making it almost impossible for blood to flow.
At just three days old Erin had her first heart surgery at UCLA to install a shunt allowing blood to flow throughout her heart until they could replace her artery when she was a little older. Waiting would allow avoiding multiple surgeries when she was so young.
When Erin turned two years old, she again went to UCLA where she had a replacement artery and valve placed into her heart. There were also multiple ventricular septal defects (VSDs or “holes”) that were repaired at this time. We were told that she would need at least one more surgery, probably in her late teens, to replace the artery because it wouldn’t grow as she did.
Fast forward 11 years and a move across the country to West Virginia present day. Erin visits her cardiologist every six months where they monitor the pressure across her conduit. This pressure has been increasing over the past year. An MRI showed that the artery (conduit) had calcified at both ends and was making the left side of her heart work harder that it should. The surgeon, Dr. Gustafson (Dr. Gus) explained it like turning the faucet on and not having the water flow as it should. He also told us that the normal life span for a conduit, like the one Erin has, is about 5-7 years. Erin has had hers for 11 years, so we have been very lucky.
On July 23, 2013 Erin had surgery to replace the existing conduit with a plastic one that will last her until she's in her twenties. Initially we were told Erin would be in the hospital for 7-10 days, but because she is such a strong person she was released in 5 days! Erin has since been released to participate in cheerleading after only 6 weeks!