Beau’s Story

Site created on October 13, 2020

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…

Newest Update

Journal entry by Laurie Morris

UPDATE ON BEAU THURSDAY 3/18/21:
Surgery is scheduled this morning at 9am. Beau will be getting the BVAD. Please keep him in your prayers again today. He WILL WIN! ❤️🙏💙


UPDATE ON BEAU WEDNESDAY 3/17/21:
Yesterday was a rough day here for sure. Beau’s heart stopped again- thank god he was on ECMO and that supported him. His lungs had blood in them and they had to do a bronchoscopy. They think it could be from the AVM’s in his lungs that were a result of his tricuspid valve repair- which is why he has had to wear oxygen. The bleeding seems to have slowed down- thanks be to god! As a result of yesterday’s events, the surgery today has been cancelled. They want to wait at least 1-2 more days to give his lungs a chance to heal. This is the second time this week it has been postponed. I know God is working behind the scenes and there is a reason for this. Thank you ALL for your prayers and words of encouragement! Beau WILL WIN this battle! 
❤️🙏💙
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