Morgan and AJ are expecting their first baby, a sweet baby boy, due September 11, 2024. At 28 weeks they received devastating news - he would be born with a rare and complex congenital heart defect (CHD). Further testing revealed he has a Double Inlet Left Ventricle (DILV) with malposed great vessels, which will require at least 3 open heart surgeries by the time he is 2-5 years old. Essentially, he will be born with only one ventricle instead of 2, causing oxygen-rich blood to be mixed with oxygen-poor blood before being pumped to the body and lungs. Meaning the blood circulated throughout his body will not provide his cells with the amount of oxygen they need. The first surgery will be a modified Blalock-Taussig (BT) shunt at only a few days old with the goal of increasing blood flow to the lungs. The second surgery will be around 3-4 months old, when he has outgrown the shunt, and is called the Glenn. During this procedure, blood from the upper part of the body (head, neck, arms) is directed straight to the lungs to allow the blood to become oxygenated without passing through the heart. This lessens the workload of the left ventricle. During this procedure, the superior vena cava is disconnected from the heart and connected directly to the pulmonary artery. The third surgery is called the Fontan procedure. The goal of this surgery is to direct blood from the lower part of the body directly to the lungs. Again, allowing blood to pick up oxygen without having to pass through the heart. During this procedure, the inferior vena cava will be disconnected from the heart and rerouted directly to the pulmonary artery. Each of the 3 surgeries comes with varying levels of risk and a 70-80% survival rate. Unfortunately, these 3 surgeries are palliative meaning they relieve symptoms by improving circulation, but they will not cure or fix his heart defect. If his symptoms worsen as he ages after these 3 surgeries, he will need a heart transplant. This prognosis will require Morgan & AJ’s baby boy to be on heart medication his entire life, receive lifelong care from a cardiologist and severely limit his physical activities. Morgan, AJ & their baby boy need all the help they can get. Extended NICU & PICU stays, high medical bills, travel/lodging to and from a hospital in Sacramento, and missed work are a few of the many hurdles they will be facing. Morgan & AJ would appreciate any donation, big or small. They are thankful and greatly appreciate the help. Please keep them in your prayers. Information on a meal train is to come. For those of you that don't me, I am Morgan's oldest sister.
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