Charlie’s Story

Charlotte Ava – Charlie Girl was born on April 26th, 2011. She was simply beautiful; we couldn’t have been more pleased to be a family of four. Our eldest daughter, Elliott, was 18 months old when Charlie was born. After a few days home, enjoying time together and watching Prince William marry Princess Kate, Charlie ended up being readmitted for jaundice.

A few days later, her jaundice cleared and while she was being discharged the neonatologist had a hunch something else was wrong. It was determined after a few tests that she had a severe heart defect. Charlie was diagnosed at six days old with an unbalanced AV canal and Hypoplastic Left Heart Syndrome.

With this condition, she required three heart surgeries. The first needed to be completed within the first week of life. Charlotte was already six days old. We were immediately transferred to Children’s Hospital and Clinics of Minnesota in Minneapolis to the CVCC (Cardiovascular Critical Care Unit). We met with her cardiologist, intensivist and surgeon that same day.

Two days later she had her first open heart surgery. That was the beginning of a grueling summer filled with ups and downs as Charlotte fought for her life. Charlotte continued to require medical intervention over the next four months. She had multiple heart surgeries, stomach surgeries and other medical complications in her short life. She was discharged from the hospital only twice and that time at home totaled less than a week.

Throughout it all Charlie showed resilience and strength. We loved her from the first moment we saw her and were immensely proud of her as she fought for her life. After four months and three weeks she was very weak, and unable to fight any longer. We kissed her, held her and said our goodbyes. She passed away on September 19th, 2011 in mommy’s arms with daddy at her side. We were forever changed.

During our time with Charlotte, and our time in the hospital, we found solace in many things: our daughter Elliott, our family, our friends, our church and our God, and often, in music. A good friend of ours sent us a number of CD’s while we were in the hospital. Within the mix of CD’s was The Civil Wars, and though the lyrics of “Poison and Wine” may not make sense as a song choice for a little girl the music was soothing to momma’s soul. The line “I always will” stuck, and ever since Charlie’s passing that song has resonated. Often when I hear it I think, “I always will love you Charlie”; “I always will miss you Charlie”; and “I promise I will always remember you Charlie”. This foundation is a testament to that. We are choosing to always remember Charlotte and her fight for life, and we choose to fight alongside the children still fighting for their lives against congenital heart defects. So though this begins with Charlie’s story, it will continue with the stories of many more little ones who we “always will….”.