Oct 14, 2020 Latest post:
Mar 18, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. ❤️💙
Beau’s story first began at 18 weeks in utero. That is when we found out that he had the diagnosis of HLHS. Which essentially meant that he would be born with half a heart. We also found out that he had heterotaxy, which meant that some of his organs were not where they were supposed to be. Beau and his twin sister were born on 8/12/15. He was taken from us at birth and transferred to AI Dupont. He had his first open heart surgery at one week old. Beau has had 5 open heart surgeries to date. He had a g-tube placed at one month of age where he has received supplemental feeds since then. He also had an appendectomy. His later diagnosis of scoliosis resulted in a surgery and placement of growing rods which will have to be replaced every few years as he grows. Beau has had many hospitalizations at AI Dupont over the past five years for complications and various other medical anomalies. No matter how big the challenge or how dark the days have been, Beau is always smiling. He may have been born with half a heart, but he was born with twice the fight! We found out a few months ago that there was nothing else they could do surgically to save his heart. He would need a heart transplant. We were referred to NY Presbyterian Morgan Stanley Children’s Hospital in NYC.
We were transferred here and are now listed as a 1A status on the top of the list. We were told the wait could be 4-9 months. We are praying everyday that God brings us his perfect beautiful heart fast! We also pray for the family that is going to lose their loved one to save ours…