Eddie was born on 12/21/07 in St. Cloud. The next morning, he was diagnosed with a congenital heart defect called Hypoplastic Left Heart Syndrome–meaning he has a “functionally inadequate” left ventricle of his heart.
Eddie was transferred to the University of Minnesota Fairview Children’s Hospital via ambulance on 12/23/07. He had a newer surgery called the Hybrid Norwood on 12/31/07. He came home on 1/15/08. In May of 2008, he had his Glenn surgery and spent 38 days in the hospital. In February of 2009, he spent five days in after his narrowed aorta was repaired. In July 2011 Eddie had his third surgery. Due to a difficult recovery, his hospital stay went on for 82 days.
2012 was a new beginning and Eddie started preschool, where he did great! He was stable and healthy, well, as healthy as a child with half a functioning heart can be. He spent all his time free time with his mom, four older siblings, grandparents, aunts, uncles and cousins. Life was amazing Eddie continued growing and loved everything.
Until the summer of 2016, when Eddie was occasionally more run down and tired than usual. A trip to the pediatrician in August resulted in a diagnosis of a virus. It wasn’t until December that Eddie’s health really started to seem different—but he still seemed okay from a heart perspective.
January 2017, I took him to the pediatrician twice in a week. At the third visit, she called his cardiology team and they requested Eddie be brought to the Emergency Department at the University of Minnesota Masonic Children’s Hospital. Eddie was admitted and tests were started. An echo showed what was wrong—heart failure.
Thus began Eddie’s next chapter: transfer to the cardiovascular intensive care unit; IVs placed; x-rays; more echoes; and the words that no mother wants to hear heart transplant.
Eddie was officially added to the heart transplant list on January 18, 2017. He had a PICC line placed where he was given medication to improve his heart function. Then a second medication was added. At that point, Eddie started to perk up and slowly return to what would be his “new normal”. He was transferred to the sixth-floor corner suite where he would live in wait until a perfect heart was found.
Eddie’s hospital stay lasted much longer than I ever expected. Life at home was paused. I quit my part-time job to stay with Eddie full-time. Eddie’s 14yo brother stayed with my parents. Eddie received school services in his hospital room; he had physical therapy twice a week; he became friends with other patients, doctors, nurses and hospital staff; we celebrated the change of seasons, birthdays, holidays away from home and the people we loved.
Until November 18, when the phone rang in the hospital room and Eddie’s cardiologist told me they had a heart for him. Ten months to the day that he was listed a family somewhere had said yes and donated their child’s heart to my child. On November 19, after 314 days in the hospital, Eddie had the biggest surgery of his life and received a new heart.
Eddie’s recovery was unexpectedly amazing. We were discharged on December 5th—home before his 10th birthday and Christmas. While life with a new heart has new challenges, things like medications and being socially limited through influenza season are easy adjustments that make being home the best thing ever. Home, to celebrate winter and spring; Easter with his entire family; to make new goals like learning how to ride a bike and finish 4th grade with his friends.
Eddie is a true miracle and amazing gift from God. The prayers of many over the last ten years have been wonderful. The support from Ireland’s Hope was a blessing and immensely helpful! But it was the ultimate selfless decision by the donor family that will forever be the best gift ever.