Xavier’s Story

In 2016 Xavier was diagnosed with having double outlet right ventricle and hypoplastic left ventricle in his mother’s uterine. Xavier’s mother had her water break at 26 weeks and she moved into the hospital to be placed on admitted hospital bed rest. The hospital managed to keep Xavier in his mother’s womb with broken water for 5 more weeks. He was then welcomed into the world on December 18, 2016. Early, but a good-sized 5 pound 1 oz baby.The day before his first surgery Xavier’s heart stopped beating and the medical staff needed to re-intubate him and manually stimulate his heart. Xavier survived this situation and went on to have his modified Norwood at a few days old. He seemed to be doing quite well while recovering. However, after healing Xavier had developed chronic vomiting up to ten times a day and was not able to keep his weight up and stayed below the first percentile. Xavier’s parents elected to do an exploratory surgery at 4 months old where they discovered his intestines were malrotated, with a double bowel obstruction and his appendix was on the opposite side of his body. The surgery went well and the doctors were able to save Xavier’s intestines. He finally was able to begin gaining weight thanks to the G-tube and Nissan Fundoplication placement as well as LADDS procedure that took place in his second abdomen surgery. Shortly after recovering, Xavier went through another cath lab and had another open-heart surgery for his modified Bi-directional Glenn. Xavier and his parents were told he would need to continue to gain weight before his next open heart surgery. ​​Xaviers parents continue to be hopeful for Xavier to live a long and prosperous life filled with emotional riches and overcoming life’s challenges with a positive outlook. No matter what that may be!

-Story written by Xavier’s parents