+3 votes
Olivia's Little Heart
This is my daughter Olivia Rose. She just turned one year old on October 7th. Olivia was born with a rare condition called Heterotaxy Syndrome, which causes organs to be misplaced, misshapen, duplicated, or missing entirely. Its a hard condition to research because every patient has a different set of problems. In Olivia's case, her stomach is on the right, liver in the middle, kidneys on the left, her intestines are not rotated correctly, she has two right lungs, and no spleen. Her heart was also majorly affected. Without going into a bunch of medical jargon, basically the top half of her heart is formed backwards, and the dividing wall between the left & right sides is almost completely missing. Her pulmonary artery also developed too small, so she survives on around 75% of the oxygen a "normal" person has. At one month old Olivia had a wire tube called a Stent placed in her pulmonary artery to keep it open, allowing blood flow to get to her lungs and oxygenate her body. During this procedure her heart stopped for 49 minutes, causing her to suffer multiple strokes, brain bleeds, and have subsequent seizures. She came out of this procedure on the ECMO machine, which takes over the function of her heart and lungs, its full on life support. She miraculously came off of ECMO after a few days, and was discharged from the hospital after a few weeks. As she grows, she needs more blood flow to her lungs, but unfortunately the stent doesn't grow with her. This December we will be traveling to Boston Children's Hospital (they specialize in complex cases like hers) for Olivia to undergo her first major open heart surgery. During this procedure they will try to reconstruct the walls of her heart, and redirect blood flow through her heart with a series of tubes, or "conduits." The surgeon, one of the best in the business, says this surgery will likely take 10-12 hours, maybe more. Her local cardiologist at CHOP estimates that Olivia will be inpatient at least until spring time after such a procedure. This is obviously a very scary time for us, and we could use any and all support! We live in Lancaster, PA and will be traveling to Boston, MA for Olivia's surgery, scheduled for December 17th, right before Christmas. I've included a link to Olivia's Facebook page, and her GoFundMe page. If you could do anything to help us out, or even just to spread awareness about her rare condition, it would be so very appreciated. Thank you! <3

181 views Nov 4, 2015
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