About David and ARDS

David Fitzgerald, a tragic ARDS victim.

D.avid had just turned 16 in August, 1994 before his accident in the Adirondacks, outside of Old Forge, New York. He was a passenger in the rear seat of a jeep, which hit a bridge abutment and turned over into a cold mountain stream. He had his seat belt fastened but was unable to disengage it when he was upside down with all his weight on it. Before a companion did disengage the seatbelt, his lungs filled with the cold mountain water, triggering a process which developed into ARDS - Acute Respiratory Distress Syndrome.

At the time of his accident, David was entering his junior year in high school. He was my most wonderful and dear son, a son as perfect as a father could wish. David was also my ski buddy, whose downhill ski form was beautiful to follow and watch. Colorado was our favorite place to ski, which we did together several weeks a year. David had a sense for rhythm and music and was an excellent guitar player. He was my music advisor, making me tapes that tried to keep me out of the musical Stone Age.

David barely escaped drowning from the accident only because one of his companions successfully administered CPR and had a cell phone to summon medical help quickly. He was transported to the Utica, NY Hospital, then on to a major regional medical center in Syracuse. He was admitted to the ICU, Intensive Care Unit. He appeared to improve for the next five days and was almost weaned off the respirator. To that point of time, the attending doctors did not definitively diagnose his condition as ARDS. I asked several times and never got a firm answer, once something like, "maybe a little bit." His condition started to deteriorate around the fifth day and I retained a pulmonary specialist. Although my impressions are non-professional, I don't think the pulmonary specialist knew much about ARDS. To this day, I often wonder how it might have made a difference if a timely diagnosis of ARDS had been made.

David spent a total of 25 days battling his condition. Numerous extraordinary medical measures were tried, and as David's condition worsened, I contacted various outside medical resources to see what could help if he had ARDS. One contact led to another, and it was at this point that a friend directed me to Dr. John Repine and the Webb-Waring Institute in Denver, Colorado.

During my discussions with Dr. Repine, I learned that, although many treatment methods for ARDS had been tried, none had resulted in clinically significant positive results. I was surprised to find out that ARDS was not a rare, esoteric disease. I was shocked to hear that many experts have said that, "pneumonia fatalities are often mis-diagnosed, and have actually resulted from ARDS."

David's lungs' function continued to deteriorate. With Dr. Repine's support and guidance, an experimental drug in Phase II trials was administered under the FDA's compassionate use policy. Unfortunately, it was probably given too long after the onset of ARDS and was discontinued because of complications. Later, after the jet respirator failed to help and David's condition declined rapidly, ECMO (extra-corporeal membrane oxygenation) was tried as a desperation measure. Open-heart surgery was necessary to connect David's heart to the external lung machine, which mechanically oxygenated David's blood. The ECMO machine stabilized David's condition long enough to enroll David in New York's Columbia Presbyterian Hospital lung transplant program. David was transported to New York from Syracuse in a specially-equipped medical evacuation jet, run by an Arkansas hospital team. Because he had to remain connected to an external lung machine, the move was extremely difficult and was almost aborted.

David spent about two weeks in Columbia Presbyterian waiting for a lung transplant match. He developed a lung infection and became temporarily ineligible for the transplant. Then, he began to run out of time as the external lung machine wore out his blood chemistry and bleeding became uncontrollable. On September 28, David passed away.

David's story is one of multiple tragedies. Foremost among these is the lack of sufficient progress in researching the causes and mechanisms of ARDS -- as well as procedures for diagnosis. My layman's understanding is that more than 150,000 cases of ARDS occurs in the United States alone each year and that 40 percent to 50 percent of such cases are fatal. It is difficult for me to understand how a disease with such mortality receives so little national attention and funding.

I have written this candid letter to ask for help in trying to reduce future tragedies such as David's.