Hailey was born in the early morning of October 22, 2008. Her birth was long and slow and they knew something wasn’t quite right, but didn’t know exactly what. When she was born, she came out very blue and her heart looked as though it was beating out of her chest. The nurses brushed it off thinking it was just a stressful birth, but soon realized something was very wrong. She was transported via a life flight plane to Primary Children’s, where she was diagnosed with a congenital heart disease called Ebstein’s Anomaly, which is when the tricuspid valve is malformed and causes the blood to not pump properly, and it allows the blood to regurgitate up into the atrium which can cause it to be abnormally large. She also had a hole in heart which actually helped her with the pressure build up in the atrium. Hailey also suffered from tachycardia, which is when you heart beats out of rhythm. Hailey spent 2 weeks after birth in the PICU (Pediatric intensive care unit) where doctors were able to stabilize her enough to come home on oxygen. Hailey was a perfect baby, sleeping most of the time due to the heart working so hard. At the age of 9 months Hailey was then struggling with episodes of tachycardia, her heart would misfire and because it was not properly functioning her oxygen levels would go below the normal range of 90+ all the way down to 60 at times. During the period of the next few months, she was life flighted again and transported by ambulance to Primary Children’s over the next few months. Because it was so expensive to keep being medically transported, Hailey spent another month at Primary’s while Doctors were trying to find a medicinal intervention to help with the tachycardia. After lots of trial and error they found the right mix to keep her from continually going into tachycardia.
Fast forward to Hailey being 18 months old when she went into to heart failure and it was no longer an option to just treat it with medicine. Her team of doctors met and had a conference planning their course of interventions and called us to tell us that they felt our two options were to go to the Mayo clinic or Boston’s Children Hospital. We chose Boston Children’s based on them having a specialist that specialized in Ebstein’s Anomaly. Her doctor in Boston was Dr Del Nido, which we are thankful for everyday! During her surgery he was able to repair the ventricle enough to help pump the blood throughout her body, he also removed part of the enlarged part of her atrium and closed the hole in heart between the atriums. This allowed Hailey to get off of oxygen, be more awake and active and I am 100% convinced the part he cut out was the areas that was causing arrhythmias. Hailey has been lucky to not have any intervention for 12 years. But this doesn’t go with out complications. Hailey visits with her doctor yearly to see the function of her heart and to keep an eye on the valve. She has a moderate to severe regurgitation of blood back into the atrium. The hole between the chambers has begun to reopen to relieve and adapt to the pressure in her heart. The repaired valve will eventually have to be replaced, there was only one chance to repair it. But we just wait, the longer you can wait the less likely they will have to replace it multiple times as her body grows. However, despite her trials Hailey maintains a strong and active life. Hailey does competitive dance where she strives to excel and grow as a dancer. She looks forward to her doctor giving her one more year of dancing each year.