On September 7, 2000 at 6:25pm, Ethan Ellis joyfully arrived as a typical and healthy 7lbs 14 oz baby boy. 

 At 6 weeks, doctors detected a heart murmur and at his 4 month checkup, his family was advised to take him to a cardiologist within 72 hours because his heart sounded like a washing machine and his oxygen level was in the 70’s.  After tests including a heart catheterization, the family was notified Ethan would need a minimum of 3 surgeries.

 Ethan’s first open heart surgery was one week later.  The cardiologist placed a band around his pulmonary artery to regulate the pressure because at 4 months old Ethan’s heart had been overworking itself and was the size of an adult heart.

 Within months of the first surgery, doctors diagnosed Ethan with VSD (a condition when there is a hole in the heart that allows blood from the left pumping chamber to mix with the right pumping chamber. The result can be too much blood being pumped into the lung arteries causing the heart and lungs to have to work much harder).  Therefore, by the end of August 2001, just before Ethan’s first birthday, he had a 2^nd open heart surgery to place a Fontan.  This surgery disconnected the pulmonary artery with a shunt and then redirected the superior vena cava into the pulmonary artery.  Ethan spent two weeks in the PICU following this surgery because of complications and pneumonia.  What the family didn’t know at the time was the medical staff were surprised by Ethan’s recovery since they hadn’t expected him to live.

 Just after Ethan’s 2^nd birthday he had his 3^rd open heart surgery where the Fontan procedure was completed by re-routing all of the blood flow so the unoxygenated blood goes to his lungs and the heart is only responsible for pumping oxygenated blood. 

 Ethan continued to have regular heart catheterizations every 2-3 years to ensure his heart continued to work properly.  At age 11, however, the pressure in his heart was consistently too high and a 4^th open heart surgery took place to attach the pulmonary valve to the aortic valve.

 A 5^th open heart surgery occurred when Ethan was 15 years old due to his heart rate being extremely high followed by him flat lining repeatedly.  This wasn’t an easy surgery since the leads of the pace maker had to be placed directly on his heart due to the Fontan surgeries.  Within just a few more months of this surgery, fluid began to build and the pressure in Ethan’s heart began to be extremely high again. 

 Ethan just turned 17 and he is currently admitted to the St. Louis Children’s Hospital at Washington University where he is hospitalized and waiting on a lifesaving heart transplant. 

 The staff at the hospital have been phenomenal to work with and because Ethan is such a kind hearted, sweet, and funny young man he is easy to fall in love with. Staff have been working hard to keep him distracted and make sure he is physically strong and mentally calm for this next surgery. He has regular physical and occupational therapies as well as art (which includes origami) and music therapy.  He has access to a teenage lounge (where staff plays Phase 10 and Uno with him) and a scenic rooftop garden.  Several staff volunteered to take Ethan on a one time visit to the zoo and since he is not otherwise allowed away from the hospital, it was truly a rare treat for him.  Recently, Ethan also got to have his own bake sale.  Staff allowed him access to supplies and a kitchen and he made cake, cookies, and chocolate covered pretzels.  He then made signs and flyers for the staff areas and sat outside his room for 3-4 hours with his goodies displayed on his hospital tray and earned $100.

 Ethan is a very typical teenager in some aspects because he likes doing things like playing video games or spending time with friends and family or eating pizza.  On the other hand, what he looks forward to most is finally being able to experience the other things being a teenager has to offer like having energy, driving a car or making dumb decisions that all young adults do. He has had to fight and be strong in spite of a weak heart all of his life and Ethan can’t wait to experience mowing a lawn or folding laundry with energy to spare. Ethan has been a true warrior and is ready to live a normal life.

 As anyone can imagine, Ethan’s transplant will cause incredible emotional and financial stress on Ethan and his family so they have partnered with the Children’s Organ Transplant Association (COTA) to help raise funds for transplant-related expenses. COTA is dedicated to organizing and guiding families in raising funds. COTA’s services are completely free of charge, and 100% of funds raised in honor of Ethan E assist with transplant-related expenses. Let’s help raise the goal of $60,000 for COTA in honor of Ethan E! By contributing to COTA in honor of Ethan E you can be involved.  Anything you can give will help.