Condition: Severe Heart Defect
City, State: Bend, OR
Club: Amity Creek Magnet School Sparrow Club Service Hours:
Date Adopted: 4/14/2015
When Eden was born, she was almost perfect. A few minutes later, nurses noticed that her oxygen levels were lower than normal. It wasn’t long after, doctors had attributed the low oxygen levels to a severe heart problem. Eden had only half a heart and a rare condition called pulmonary atresia.
Eden was immediately flown to Doernbecher Children’s Hospital in Portland where cardiologists began running additional tests. At just seven days old, Eden had her first open heart surgery. In this surgery, a BT Shunt was placed. Although this procedure did not fix Eden’s heart, it helped resolve issues and increase oxygen levels. Eden then could have more blood flow to her lungs, but this was only a temporary fix.
Unfortunately, the BT Shunt was just the beginning of a difficult, heartbreaking journey. Eden would have to have a series of three surgeries to re-plumb her heart. After her first surgery, Eden went into Cardiac Arrest and had to be manually revived through CPR. She was then in the ICU for a month after surgery. The first six months of life were incredibly tough on Eden and her family. She was diagnosed with Chylothorax, which was a side-effect of surgery and she could not have fat in her diet. She was tube fed 24 hours a day and had to have EPO injections to increase oxygen in her blood.
Since BT Shunt was only a temporary fix, Eden had her second open heart surgery, called a Glenn procedure, at 4 months old. This procedure was one step closer to re-plumbing Eden’s heart and increasing oxygen levels to Eden’s lungs.
Eden’s final surgery was the most risky one of all. At just over three years old, Eden had her third open heart surgery, called a Fontan procedure. This was the last surgery to re-plumb her heart, so it functions properly, until she becomes an adult. Eden’s parents were told by doctors that the surgery was too dangerous to be performed while she was on a bypass machine, so doctors had to removed arteries, clamp them and then reattach them all while her heart was still beating on its own.
The result was a success, as Eden can now run, jump and play without being out of breath. Although Eden has had a difficult journey so far, and will continue to battle this rare heart condition, she is a fighter! She loves mermaids and has a newfound love of drawing.
Eden will be adopted as a Sparrow to Amity Creek Elementary in Bend. Students will work hard to raise Sparrow Cash for Eden and her family through sponsored community service and fundraising projects.