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  Since 2006, the Saving tiny Hearts Society, has been working to fulfill it's mission of raising money for grossly under-funded, crucial, lifesaving research of congenital heart defects (CHD), America’s #1 birth defect. With your generosity and your contribution we will be able to continue to try to help the over 40,000 babies born with a CHD every year! We are at the pinnacle of new breakthroughs in congenital heart defect research and can really make a difference in the future lives of all of these children. The Saving tiny Hearts Society is the only organization in the country that was formed for the sole purpose of raising funds for congenital heart defect research with 100% of general donations going directly to funding this research. There are no paid employees and we are run entirely by dedicated volunteers. To date (March 31, 2010) the Saving tiny Hearts Society has raised in excess of $435,000, and funded 3 research projects (and actively seeking grant applications for additional projects to fund). The inspiration for starting the Saving tiny Hearts Society - our story (as told by Francie Paul, the Saving tiny Hearts Society’s Founder)…  On August 11, 2005 we had a beautiful baby boy, Joshua Bennett Paul. About 4 hours after our baby was born, the nurse and a pediatrician came into our room to tell us that something was severely wrong with him. He was put on a ventilator and an ambulance was rushing to transport him to The Children's Memorial Hospital in Chicago. Joshua's blood oxygen was well below 50%; a healthy newborn is generally oxygenating at 100%.When we arrived at The Children's Memorial Hospital the cardiologists told us that Joshua has severe complex congenital heart disease (single-ventricle - missing the wall between the bottom two chambers in his heart, pulmonary stenosis - significant blockage at the pulmonary artery limiting blood flow to the lungs and transposition of the great arteries - the great arteries bring the blood to the wrong sides of his heart)… something that we were not aware of or prepared for! We thought that we were going to die. The cardiologists kept Joshua on a ventilator, gave him medicine to keep his arteries open and said that he would need three heart surgeries, the first which would take place as soon as he stabilized.  At four days old, Joshua had a "Blalock-Taussig shunt" placed. (This type of heart surgery was the very first ever performed on a human child/person and was featured in the HBO movie "Something The Lord Made.") His second heart surgery was supposed to take place at 6 months of age, but Joshua's blood oxygen levels had started to plummet again into the scary 50% levels. His Cardiologists and Cardiovascular and Thoracic Surgeons felt that he had to have it much sooner - even if it was more dangerous because he was so young (only 3 months old) and so small.At 3 months old Joshua returned to The Children's Memorial Hospital where he underwent his second heart surgery, the "Bi-directional Glenn." His third surgery, which took place in June of 2008, is called the "Fontan". This final operation completed the intended goal of re-routing all of Joshua's un-oxygenated blood to his lungs by entirely bypassing his heart. Only his oxygenated blood is distributed to his body through the pumping of his heart. These new pathways prevent his blue blood and red blood from mixing in his single ventricle allowing Joshua to oxygenate at a more healthy level…. simply amazing! Doctors are optimistic that he won't need immediate follow-up surgeries, hopefully avoiding the need for a heart transplant …God forbid!  It has been an absolutely devastating nightmare for us, and has been quite humbling. We always knew how precious life was but we were just not prepared to face its fragility everyday. We are so grateful for family, friends, everyday and most important health… If one has that they truly have everything. Joshua is our brave, wonderful, incredible, little hero. He is growing beautifully, eating a ton, talking up a storm, smiling and laughing all of the time. (Updated: February 2009) |
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