by Eileen Rubin Zacharias
September 15, 2002
As many of you know, the grim statistics for those diagnosed with acute respiratory distress syndrome are around 50% mortality; most of those that do survive ARDS will tell you that, at least one time or another during the course of their hospitalization, they were on the brink of death. Most will tell you that their doctors call them their “miracle patient.” But the truth is that though half do survive, half unfortunately do not. And so, though the ARDS Foundation strives to keep the website and the newsletter as positive and as hopeful as we possibly can, we want to also keep it honest. And it is so important for people to hear the stories of those who had ARDS and did not survive. The stories of what their families went through. Through those stories we are able to learn, to grow, to change, and maybe make someone else’s entry into the ARDS arena just a little bit easier.
Because I think I said in our last newsletter that went out in the mail…becoming part of the ARDS family is much like becoming a member of any family…you have no real choice. But after enduring the wrath of ARDS on a loved one, many who have been affected by ARDS choose to become part of our organization because they just cannot bear to see any other family suffer what they endured without at least a little more knowledge or guidance. And it does not matter if their loved one was a survivor or not…they just know that no one else who has not had a loved one diagnosed with ARDS will comprehend the meaning of those four letter-ARDS-and they want to be able to make it a little bit easier…be it by an email with encouragement or a prayer, a website with information, or offering an anecdote about what their loved one went through.
On September 12, it was the one-year anniversary of the death of the eleven-year-old ARDS patient whose aunt I had been writing to the entire summer. I had not heard from her aunt for a few days…I was nervous as I wrote. She lived on the East Coast so it was coupled with that fact, the events of 9/11 and that I had not heard in so long, that I wrote with trepidation. But I was compelled to write. And so I, as many of us who write to those in crisis know, when we do not hear from people for a few days, it usually means it is not good news, but still, with ARDS, we always want to hope for the best, because with our own cases, we were once there, too, and somehow, we pulled one last miracle.
But when I opened the email, I was still shocked that she did not make it. I felt the loss as if I were part of that family. I looked at the keys on my computer keyboard, but the words would not flow. It seems there are never sufficient words in situations such as these. I managed a few, but what was conveyed to me by this girl’s aunt were the more important words…. she told me that if I ever got an email from someone like her, to let her know, because she would be happy to pass on the gift of support that she had received. Which is, of course, one of the most important ways the ARDS Foundation is able to operate.
And the ARDS Foundations feels that it is important that stories like these, like Courtney’s, need to be told, so that maybe other children and their parents might not have to go through everything that these children had to endure. But if they have to go through even some of those things, they know that they have a place to go to, people to turn to, for guidance, information, prayers, and support. And hopefully, things will change, statistics will rise, and we will not lose as many children, or adults, to ARDS.
“In loving memory of Emily, Courtney and all of the children who have died from ARDS”