United States Congress and Senate
United States of America

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. I had an ultrasound at 8 weeks and then another at 8 and a half months. The ultrasound was performed, and they said everything was OK but wouldn't give us any pictures until they gave in to my begging a few weeks later- only to give a picture of Shane's backside. An ultrasound at 8 months gestation on a baby who had virtually no left diaphragm, the majority of his abdominal organs in his chest, 2 heart murmurs, and a displaced heart, and they claimed they saw nothing.

When we requested Shane's medical records a few years later, there it was in black and white on the technician's note- "Stomach missing." They knew something was wrong and never told us, never did more testing, never referred us to a specialist. If we had known, had time to research, we never would have allowed Shane to be treated at the facility that he was transferred to after birth, a hospital with an extremely low CDH survival rate. If we had known, Shane wouldn't have been subjected to the trauma of a transfer and wouldn't have been delivered at a hospital that didn't even have a pediatrician in the building because it was after 5:00 p.m and he wouldn't have suffered many severe complications. Shane died in 1999 at age 6 and a half as a result of these complications. They had no right to withold information that could have saved my son's life.

Your unborn baby has been diagnosed with a lethal birth defect. Does your doctor have to tell you? Will your rights to seek proper medical care for your baby be taken away because your obstetrician wants to "spare you pain"? Will your baby die because your obstetrician isn't educated enough to know that their are treatments available? Think this can't happen to you? Think again. We the undersigned demand proper disclosure from medical authorities so that proper treatment can be administered to save lives.

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The Petition For Disclosure Of All Diagnoses At The Time Of Diagnosis petition to United States Congress and Senate was written by Dawn M. Torrence and is in the category Health at GoPetition.