Petition For Restructuring Of The Patient Protection Act Requiring Patient Permission For EVERY Expe

My son, Shane, was born with Congenital Diaphragmatic Hernia (CDH). CDH is a birth defect that occurs when the diaphragm does not fully form allowing the abdominal organs to enter into the chest cavity, preventing the lungs from growing. He was born at a small, country hospital and transferred to a larger, university hospital. When Shane arrived at this hospital, he was doing so well he wasn't even intubated, amazing for a kid that had only 1 lung, but oxygen alone seemed to stabilize him enough for transfer, and he was wide awake, and his eyes were focused when they wheeled him in to say good-bye before he boarded the helicopter. By the next day, he was paralyzed on Pavulon and ventilated-- standard procedure to rest his lungs and truly stabilize before his repair. During the 3 days before his repair, the surgeons explained to us that gore-tex would be used but we never saw them the morning before Shane's surgery, and we were never even asked to sign a consent form. After 6 hours in surgery, the surgeon came out and told us that he had used part of Shane's lung sequestration to repair his diaphragm. The lung sequestration was the bottom portion of Shane's lung that hadn't fully formed or inflated and looked like a deflated balloon. He had an extra blood vessel going from his heart to this "squished" portion of lung, which was not removed during the repair and which caused congestive heart failure. This was an extremely experimental procedure, never documented in medical journals, never even tried on lab animals, and it just didn't even make common sense to use damaged tissue with no elasticity. Our consent for this procedure was never asked or given. For 4 months, Shane couldn't be stabilized. His blood gases were so out of whack that an ECMO machine was parked beside him for weeks, but it was never used. He endured pneumonia 4 times, dozens of blood infections, a tracheostomy, and by the time his 2nd repair was done, he had suffered severe brain damage leaving him blind and deaf and in the intensive care unit for a total of 10 months.