"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26 Our little boy, Austin, was diagnosed in utero at 13 weeks with Hypo plastic Left Heart Syndrome (HLHS), Double Outlet Right Ventricle (DORV) with mitral atresia. HLHS is 100% fatal unless those affected have a heart transplant or series of three open-heart surgeries in their first few years of life. My husband and I decided that the three open heart surgeries would provide Austin with the best opportunity for life, both now and in the future. He was born on 14 June 2007 and immediately transferred to Children's Hospital of Philadelphia. That day they also determined he had a severe hemorrhage in his brain. Tests later confirmed it was a tumor, originally thought to be malignant. Thankfully, his cardiothoracic surgeon proceeded with the planned first open-heart surgery, which took place when he was 3 days old.
Austin turned 3 this past June (2010). He has survived and flourished despite three open heart surgeries, one craniotomy, a g-tube placement, and a myriad of other medical tests and procedures. He does have a developmental delay and right-sided hemiplegia, caused by the tumor resection, but has a smile and laugh that will steal your heart. He is amazing! We know God is holding him in his powerful hands, and we pray that he grants us many years with Austin, one of his special angels. For a little more information regarding Austin, below is a link for a story People magazine did on the miracle that was his first year of life: http://www.people.com/people/archive/article/0,,20230510,00.html.
to Congenital Heart Defects Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.