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McKenzie (Izzy) S.
Ohio
Birth Date - March 17, 2008
Main Diagnosis - Tetralogy & Pulmonary Atresia
THEME: Teddy Bears
Biography
McKenzie was diagnosed in utero with tetralogy of fallot and a chromosomal abnormality. She was born in March 2008 with a microdeletion of chromosome 22q11.2 (commonly known as DiGeorge's Syndrome, VCFS, velocardio facial syndrome, or 22q Deletion syndrome) and severe congenital heart defects: tetralogy of fallot, pulmonary atresia in both pulmonary arteries, "millions" of tiny collateral vessels providing blood to her lungs, pulmonary vascular disease (also called severely hypoplastic pulmonary arteries--her pulmonary arteries look like a tree without leaves rather than a tree with leaves as they are supposed to look), dual left anterior descending coronary arteries, and a partially opened PFO (small ASD). Basically, McKenzie's circulatory system was made up of tons of itty bitty vessels going everywhere rather than the much fewer larger vessels that are normally present.
At 7 days old, McKenzie underwent her first major heart surgery to insert the BT shunt that helped her miniscule pulmonary arteries grow. Within a week, her pulmonary arteries had doubled in size (still way too small, but much bigger than they were). McKenzie did not adjust well to her new pulmonary arteries at first and suffered from SVTs (extremely high heart rate), causing her to be in the hospital for almost two months. But once McKenzie was out, she flourished.
Izzy (as she had been nicknamed by her big brother) had her “full-fix” open heart surgery for the ToF on April 13, 2009. Part of her fix was done using a human graft as a conduit. They also patched the extraordinarily large hole she had between the ventricles and made the aorta go only over the correct part of the heart. Finally, they shaved her tricuspid valve because it was stiff and thick. Within months of this fix, it was noted that Izzy had a severe leak in her tricupsid valve and the pressure in her pulmonary arteries was too high. Her right pulmonary artery had kinked following her "full-fix", so in September 2009, she had her fifth heart catheterization, where they stented the right pulmonary artery. Unfortunately, her pressures remained elevated and her tricuspid valve leaked a lot, causing her heart to start going into right sided heart failure.
On September 20, 2010, Izzy underwent her third major heart surgery (second open heart), where the doctor replaced her conduit with a porcine (pig) conduit with a valve, fixed a gap between two leaflets of the tricuspid valve, patched the PFO, and expanded the opening to the left pulmonary artery where the stent in the right pulmonary artery was blocking blood flow.
Following Izzy's third major surgery, her heart began improving. And in the summer of 2011, we were told her heart was the best it could (or would) ever be. In September 2011, it was noted that Izzy's pulmonary artery pressures had risen again in places. She does not have true "pulmonary hypertension", but her arteries are being damaged just the same in the places where the pressures are high. Izzy had her seventh heart catheterization in November 2011, at which time the doctors found her pressures in her right ventricle increasing again. Izzy continued to slowly decline over the next year and in January 2013, in preparation for Izzy’s 8th heart catheterization, she had a cardiac MRI and lung CT. As a result of those scans, it was determined that Izzy’s heart continues to go into worsening failure, but that no surgery could help it. Her only choice would be a heart transplant. Unfortunately, due to Izzy’s anatomy of her heart and lungs, she is not a candidate for a heart transplant without receiving a lung transplant as well.
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Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
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Squares were donated by "Operation Teddy Bear"
