Project Description

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 after discovering her water was in fact broken. 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.

This was a perfect size as a few days later he would have his first surgery and needed to be a minimum of 5 pounds. 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 surgeon did the appendectomy that day and he would need another surgery as soon as possible to have another procedure to fix the obstructions and malrotstion. 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 Gtube and Nissanfunduplication 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. Which would be taking place one to two years from his most recent surgery in the summer of 2017.

Unfortunately, Xaviers heart has struggled post his procedures. To help combat this, he had a new technique repair done from his lungs to his heart to coil inside the veins and help decrease flow to his lungs where blood is pooling and not properly circulating. If Xaviers blood pooling pressure levels do not get better after his most recent surgery and new medication he will no longer be eligible to keep his own heart and will not be a candidate for his next surgery that is hopeful for summer this year 2019. He will then need to be placed onto a transplant list.

Xavier has another heart repair cath lab coming up in Spring 2019 where surgeons can make more necessary interventions by placing shunts or coils into the veins needed by accessing them through his neck and groin. 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.