Beau, the Tiny but Mighty
Donation protected
Beau was born on February 1st, 2022 with several complex heart defects. The nurse drew a picture of his heart and labeled it to help us understand his physiology better. He’s classified as a single ventricle baby, which means he will receive three surgeries to correct his heart and help him live a “normal” life. He also has pulmonary atresia, heterotaxy with asplenia, and dextrocardia, to name a few. He does not have a spleen, and his heart, stomach, and liver are on the opposite side of the body. I’ve added links to the bottom of this post from Children’s Hospital of Philadelphia’s (CHOP) website that explain his condition and surgeries.
A stent was placed in Beau’s heart to keep a valve open that allows blood to flow from his heart to his lungs. This valve is open in utero and closes hours after birth. This procedure gets him to his next surgery, around 3-6 months of age. However, babies are not very stable until their second surgery and are closely monitored. Beau recovered very quickly from his stent being placed aside from a controlled rupture in his carotid artery, but the doctors weren’t too concerned about it and let us go home on February 9th.
We had Beau home for two days and noticed he wasn’t doing well, so we took him to the local emergency department (more details about this event can be found on my and Jasmine’s Facebook feed). He was flown to CHOP that night, and they found that he was in shock and in the early stages of heart failure. The doctor’s best guess is that the stent was allowing too much blood to flow to his lungs and not enough to his body. Over the past week, he had his ups and downs but showed overall progression. They found that his aneurysm began to rupture more and was growing in his neck. He got immediate surgery to correct it. This morning, he repeated last Friday, February 11th, and started going into shock again. Fortunately, he was in the CICU at CHOP, and they caught it early enough to intervene to keep it from worsening. The doctors dropped the bomb on us and said they didn’t expect him to go home anytime soon. They said he will be here for at least a few weeks and possibly until his second surgery.
We are currently staying at the Ronald McDonald House (RMH) in Philadelphia where they provide lodging and dinners for families with hospitalized loved ones. Jasmine and I have two girls at home (7 and 13 months of age) in York, PA, who are being watched by Jasmine’s mom. However, she has been on unpaid leave and must return to work. Therefore, Jasmine and I will be traveling from York to Philadelphia to split our time between our family.
I’ve had many people reach out and offer to help if we need anything and, after much thought, my wife and I have decided to start a GoFundMe. Please do not feel obligated to donate, but please continue to pray for him. Any donations made to the Beau Brigade (coined by someone else) will be used to pay for any medical equipment/bills, travel expenses, and all aspects of daily living as we support our family. We appreciate all of the love and support.
Love,
Joseph and Jasmine Gilbert
Co-organizers (2)
Joseph Gilbert
Organizer
Mount Wolf, PA
Jasmine Gilbert
Co-organizer