We had no idea Luther had a heart condition until he was born and was not doing well. A NICU nurse heard a murmur that was really loud. After further testing, we discovered that there was a tumor on his heart THE SAME SIZE as his heart. Within hours of birth, Luther was whisked away by the trauma team to CMC main where he stayed in NICU and battled for life for 3 weeks. Thankfully, with lots of prayer and a gracious touch from God, he made it through that event but only a month later went into heart failure in a scary episode and ended up on meds at that point. By 1 ½ years of age, however, he was taken off all meds and is thankfully doing really well. Luther’s condition is almost extinct so there is not a lot of data to point to and God is writing his story.
For now, we enjoy every precious moment with him. He has remained really small in stature, unlike our other children, I believe because of his high metabolism due to the weight of the tumor, but he is full of energy and spunk! We simply get an echo every 6 months to check on things, and so far, the tumor is NOT growing, but the heart muscle is. Miraculously, he has fully normal heart function as well. We are so thankful! What started out as a very scary journey has progressed into one in which Luther lives a very normal life.
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Becky Moore "Mom"