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Jul 14, 2018
Daisee was born with rare, complex, congenital heart defects on August 29th 2005. She has dextrocardia (heart flipped over and on the right side of her chest), pulmonary stenosis (narrowed pulmonary artery), transposition of the great arteries (pulmonary artery and aorta are switched around), and a ventricular septal defect (the dividing wall between the 2 pumping chambers did not develop). Because her great arteries were switched around, the non-oxygenated blood (blue blood) was being pumped back into her body rather than being pumped into her lungs to become oxygenated. The oxygenated blood (red blood) that was coming from her lungs would then be pumped back into her lungs rather than going to her body. The doctors told us that the reason Daisee survived was because the wall that never developed between her pumping chambers allowed the blue blood and the red blood to mix. This gave her a small amount of oxygen in her body, keeping her alive. She survived the first 2 years of her life on only 60% oxygen levels. Whenever she would cry or cough, sneeze or do anything that required more oxygen she would become blue around her lips and nose.
Her first surgery was at 1 month old. Her pulmonary artery was almost 90% narrowed, and she had to undergo immediate, emergency surgery. In this first surgery they put in a shunt, which redirected the blood flow from her pulmonary artery. Her 2nd surgery was at 9 months of age. Daisee outgrew the original shunt and it had to be replaced with a new, larger one.
Under normal circumstances, transposition of the great vessels can usually be repaired just by surgically switching the vessels back around. It was explained to us that it is like having your hot and cold water lines hooked up backwards. However, in Daisee circumstance, her pulmonary artery was useless because it was narrowed and they could not just switch them around. Daisee had her 3rd surgery when she was a year and a half old. They did a complete repair of her heart called the Rastelli procedure. It was the first Rastelli repair they had done on a heart that was completely upside down and on the right side, which made it even more complicated. They created a conduit on the outside of her heart using a donor artery, bovine tissue to redirect the blood flow on the inside of her heart, and gortex to repair the wall between the pumping chambers. (These parts will not grow as Daisee grows and she will continue to need to have them replaced throughout her lifetime.) Because Daisee’s chest cavity is so small, and because of the awkward position of her heart, there was not enough room to allow for the conduit on the outside of her heart without squishing it. So, they also had to remove a small fraction of bone from two of her ribs to make room for the new artery.
After this surgery Daisee began to grow because her body was no longer deprived of oxygen. She cannot be allowed to do contact sports, but other than that, she is now a happy, sassy, loving little four year old. The only thing that that holds her back is her mommy and daddy!