Testimony of Stephanie's Mom

March 3, 1993, a beautiful Florida day outside. Inside the pediatric intensive care unit the nightmare was only beginning. My 5 year old daughter, Stephanie, had just been diagnosed with HUS (hemolytic uremic syndrome). A term only recently familiar to me through the Seattle outbreak articles. Those letters, HUS, became an all to familiar reality. HUS was something you read about, something that happens somewhere else, and to someone else. What a fallacy!

 I listened intently as the pediatrician described the kidney failure that was already in progress. He also explained why her skin and eyes were turning yellow, why her body was bruising to the touch and why she was only partially responsive. His final words "its going to get worse over the next few days". I had no idea what getting worse could mean, this was already similar to a chapter front a horror story. I did not have the slightest clue how bad Stephanie would really get, nor how fast.

 Family and friends stood by me as I watched my only child, a lively red head, go through something no parent should ever experience. I longed to hold her, to comfort her, during these painful days and couldn't. Her little body was bruising with the slightest touch. Imagine your own child asking you not to touch her because it hurts.

 Thinking back, if my daughter were taken away from me at that point my last memories would have been of balancing her body and holding her head up as she was screaming, crying, in a cold sweat, struggling to survive this fifth day of bloody diarrhea, this fifth day of hell. Parental instinct tells you to do something, but little can be done for this disease except watch a perfectly healthy child deteriorate. This must be a nightmare, why won't somebody please wake me up?

 Over the next few days the emotional roller coaster would probably be better described as a runaway train in the mountains. A little improvement, and little regression. Finally on day nine I began to see me daughter slowly emerging from this lifeless body. Stephanie recuperated at home for several months. Nearly three years later she still experiences medical complications such as kidney and pancreas problems. I have no idea where all of this will take us. We deal with each medical problem one by one and one day at a time. I am grateful for each day we spend together, good or bad, many others are not so lucky. I would invite anyone at FSIS to accompamy Stephanie on quarterly hospital visits. Maybe someone else could offer a better explanation as to why she must endure hours of pain.

 In the many months since Stephanie's illness I have come to know many parents whose children have suffered this terrible disease. As parents, we stand by and watch our children's bodies become invaded by the mechanics of modern medicine. These children are literally attacked internally by this pathogen. Parents are tortured hour by hour. Why are we experiencing this stance at the bedside of America's children, watching them die or nearly die, for no reason except industry greed. The key word here is profit. Children are suffering, some dying and our meat industry is being allowed to carry on "business as usual". Governmental action has been slow. What was promised after Seattle is still not in place, 3 years later.

 As a nation we need to accept the ugly truth and evidence of the source of this pathogen, E.coli 0157:H7, the cause of HUS. Mandatory reporting of not only E.coli 0157:H7 but HUS as well, on a state level will hopefully detect outbreaks arid their source. We must encourage and work with the few remaining states to require mandatory reporting for E.coli 0157:H7, HUS and hopefully TTP. County health departments must begin a proactive approach instead of a reactive approach. Test meat from suspected sources whether one child or ten children become ill. Let's hire the needed meat inspectors to fill vacancies, slow down the lines and allow these inspectors to perform the task hired for. Microbial testing must be a part of our system at whatever cost. No amount of money can replace the children lost or pay for the suffering the survivors have encountered. Let's bury the idea that our current method of inspection - sight, smell, and touch - works, in memory of the children lost across our nation, and base our processing on science such as microbial testing.

 The USDA'S inability to conquer the task of safety with $600 million per year budget is a crime. In order to steer the USDA away from the act of criminal injustice we must band together in support of the FAMILY PROTECTION ACT. Let's replace the burden of cooking with the task of microbial testing. Microbial testing has been proven to work in Florida recently and it has been in place in other countries which have minute cases of this hideous disease. We do not have the safest meat supply in the world, proven by the 50 outbreaks since the Jack-in-the-Box crisis. But we do have the ability to make it the safest. Now we must motivate industry to make the necessary changes and motivate USDA to keep promises and work for consumer interest as directed in the FAMILY FOOD PROTECTION ACT.

 Let's answer the echoing screams of our children in pain, the children suffering this horrendous disease, these screams calling to our government for help. The answer is the FAMILY PROTECTION ACT. The nationwide illness and deaths from this disease are the absolute truth of failure in our current system. Let's admit it, and work together for reform. In the end there will be less shame in the failure of our system than in saying our Government failed to admit it!