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Advocate Spotlight: Lisa, Donny and Jack Scarfo, Pennsylvania

by Melissa B. on Tuesday, September 3, 2013

Lisa, Donny and Jack Scarfo Pennsylvania

Jack was prenatally diagnosed with Tetralogy of Fallot, a complex congenital heart defect, prior to his birth on April ‎15‎, ‎2008‎. ‎Jack and his twin ‎brother, Nathan, were delivered in Philadelphia in the event that Jack should require his open heart surgery at Children's Hospital of Philadelphia immediately after birth‎.

Thankfully, Jack was more stable than we had suspected he would be, and we were able to delay his life‎-‎saving surgery until he was ‎3 ‎months ‎old‎. ‎During this waiting period, pulse oximetry testing was an important tool for us to monitor Jack's oxygen saturation levels ‎- ‎a key factor ‎in determining when his little heart was starting to fail and surgery would need to be performed‎. ‎Jack had his successful surgery in July of ‎2008‎. ‎

Today, he is a happy and active ‎5 ‎year old, who loves t‎-‎ball, swimming and playing outdoors‎. ‎He will remain under the care of a cardiologist for ‎the rest of his life, and may require additional procedures as he grows‎. ‎
Since Jack's diagnosis, our family has become active in fundraising and awareness for congenital heart defects with various ‎organizations, including the American Heart Association‎. ‎During this time, we have had the opportunity to meet many families ‎- ‎families like ours, ‎who had the benefit of prenatal diagnosis, and families who did not learn of their child's diagnosis until birth‎. ‎For children whose heart ‎defects were not recognized prenatally, pulse‎-‎ox is a simple and non‎-‎invasive tool to measure oxygen‎...‎and in children with critical heart defects, ‎the results of this test could prove life‎-‎saving‎.

‎Including this test as part of the standard newborn screening panel will ensure fewer infants are sent ‎home from the hospital undiagnosed‎. ‎Our continual goal is to have more and more congenital heart defect stories turn out just like our ‎Jack's‎.

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