Oli's Open Heart Surgery Expenses

Olivia Rose arrived on October 7th, 2014. She was born with Complex Congenital Heart Disease and Heterotaxy Syndrome (RAI) with Asplenia. After a year of overcoming all odds, we got the call to schedule her first open-heart surgery this December. We will be traveling hundreds of miles out of state to Boston Children's Hospital, where they are best suited to care for Olivia's complex condition. 

Having an open heart surgery in the middle of RSV/flu season is risky, especially because Olivia has an extremely compromised immune system. Even a small cold has the possiblility of taking her life. One thing that could help protect her through it is a series of shots called "Synagis" which protect against RSV. These shots are extremely expensive, costing $5226.28 per shot (5 shots total) and Olivia's insurance has denied covering her this year, but in an effort to protect our sweet girl as best as we can, we have decided to pay for the shots out of pocket. These costs, on top of living far away from home for a few months, and the cost of Olivia's care and hospitalization, all add up to be more than anyone should have to face, especially while caring for a sick baby. 

Olivia's specific heart defects include Double Outlet Right Ventricle, sub-pulmonary Ventricular Septal Defect, Pulmonary Stenosis, Common AtrioVentricular Canal, Atrial Inversion, Anatomically Transposed Great Arteries, and Partially Anamolous Pulmonary Veins. Her Heterotaxy Syndrome also adds Asplenia, uncorrected Malrotation, Bilateral Superior Vena Cavas, two right (tri-lobed) lungs, right sided stomach, mid-line liver and left sided kidneys. She had a heart catheterization and stent placed in her Pulmonary Artery on 11/11/14 , at just one month old. She went into cardiac arrest post-op for 49 minutes before being successfully placed on ECMO for 3 days. During this time she suffered multiple strokes, seizures, and brain bleeds. She's currently followed by many specialists including Cardiology, Immunology, Neurology, Gastroenterology, Endocrinology, and Genetics.