I was 20 weeks pregnant when I found out my baby girl had Heterotaxy Syndrome, with severe congenital heart defects. From that moment on I was changed. Evelyn brought deep meaning to words like bravery, resiliency, determination, love, and on the flip side, anxiety. She spent the first 6 ½ months of her life in the Pediatric Intensive Care Unit (PICU) where she had 4 major surgeries- 2 for her heart, 1 tracheostomy, and a G-tube + nissen. At 7 months old we took her for a walk outside as a family for the first time and she was afraid of the wind. I often got comments on how her eyes were sparkly and filled with what some described as wisdom. She was calm, sweet, and easy-going. Her entire life she had weekly appointments with speech therapy, occupational therapy, physical therapy, and rotating appointments with her specialists. For most of her life she was connected to a ventilator and got the majority of her calories through her G-tube. Yet despite the rough start to her life, and spending so much time with doctors, she grew, developed, and flourished. Evelyn was silly and liked to make people laugh. She could be sassy and was tough. She loved music, books, her brother, and animals. During her countless hospital stays she looked forward to music therapy and the therapy dogs that came to visit. She loved Moana, Tarzan, and Planet Earth. She learned to crawl, walk, and speak. She was a happy girl and got real joy out of life and experiencing new things. Seeing her “awe” for the world was an inspiring experience and made those around her feel more grateful. We knew that she needed a big and extremely complicated heart repair. We had talked about it and planned for it since my 20-week ultrasound. She needed her 4 other surgeries to get her body to a stable point so it could grow and be strong enough for her heart repair. The goal was to do it between her 2 nd and 3 rd birthdays, depending on how her body tolerated the low oxygen and inefficiency of her heart. As her second birthday approached we began to plan. We took her to 2 hospitals and neither of them felt comfortable operating because it was too complicated. My husband and I flew out to 3 others to visit with the surgeons and tour the hospitals. The minute we met Dr. Ohye at C.S Mott Children’s Hospital in Michigan, we knew he could do it. I’ve never felt more sure about anything in my life. Within 2 months we had moved to Ann Arbor, Michigan. Evelyn had her heart repair in September of 2017 and it was successful. After a month stay in the hospital she was released and on the mend. We felt so grateful and excited about all the possibilities for her future. 6 months later she was admitted to the hospital to get a cardiac catheter to check on her heart function. We got the good news that her heart repair was holding up wonderfully and that her heart was functioning at a normal level. To say I was ecstatic is an understatement! I remember holding her that evening in a rocking chair next to her hospital bed and feeling joyful. The next morning, however, in a whirlwind, Evelyn passed away abruptly. She had an unexplained GI hemorrhage, a hole somewhere that the doctors could not find and just like that she was gone. I am forever haunted by that experience and miss her terribly. My heart is broken but one thing I know for sure is that the world was a better place with Evelyn in it. In an attempt to keep her goodness, her bravery, and her joy alive we have set up a foundation in her name. We hope to do good and spread her light both to those that participate as well as to the families walking a similar path as ours. We hope to bring any relief and encouragement that we can.

With Love,

Lindsey Gibson