The trusted source for
healthcare information and
HAIs: One family's tragedy told in agonizing detail
A 'woman on fire' tells her story
Editor's note: As part of its recent annual commemoration of International Infection Prevention Week, which is held the third week of October annually, the Association for Professionals in Infection Control and Epidemiology invited a woman struck by personal tragedy to step up to the mic and tell her story. What followed was a compelling, deeply personal description of the human consequences of health care-associated infections (HAIs), which are too often discussed in terms of numbers, rates, and graphs. Victoria Nahum, a self-described "woman on fire" — who co-founded the Safe Care Campaign (http://www.safecarecampaign.org) after the death of her son — urged health care workers to perform a simple, lifesaving act: wash their hands before touching patients. It is estimated that this cardinal principle of infection prevention is practiced appropriately less than half the time during patient encounters, contributing significantly to some 100,000 deaths annually due to HAIs. Here is an account of one such death, left in Nahum's powerful words but edited down from her presentation.
On Labor Day weekend 2006, our 27-year- old son Josh broke his femur and fractured his skull. After recovering for five weeks in a Colorado ICU, he had finally been released to a nearby physical rehab facility, but within a matter of days he began feeling nauseous and running a fever. A lumbar puncture revealed bacteria — Enterobacter aerogenes —in his cerebral spinal fluid. Within just a few hours of being diagnosed, the infection actually caused so much pressure on his brain that it pushed part of it into his spinal column, damaging his spinal cord and ending his ability to breathe on his own ever again. In a matter of a couple of hours, this infection had dismantled Josh, overcoming his body and causing him to become a permanent ventilator-dependent quadriplegic. Josh died two weeks later, but not from the original reason he had been admitted to the hospital. He died unnecessarily from health care-acquired bacteria.
When Josh was dying, more than 70 of his friends waited for two days in the hospital lobby for the last chance to say goodbye to their dear friend forever. Everyone had their own favorite memory of him: fun, silly, poignant stories of some hilarious antic or remarkable wonderful moment or adventure that they had shared together. . . . When Josh was dying, he was only able to see in the direction that his head was pointing, because he had become completely paralyzed. He couldn't move any part of his body at all, but he still had facial expressions, he could still move his lips and his eyes, and he could see and he could blink.
When they had all left the ICU and even my husband had spoken his final words of love to his dear young son, I watched him back away from Josh's view and now it was my turn. So I moved close to him and bent over him, maneuvering my own face just inches from him, tilting it to mirror the way that he was lying in his bed. I remember him looking thoughtfully and determined, straight and deep into my eyes, and he was smiling so big at me, just like he always did. I remember smiling back at him at this awful, bizarre moment — for his sake. I remember touching his forehead and cheek and cupping his face in my hand so he could actually feel me there. I wanted so badly to comfort him, but I didn't know how to, so I thought if I touched his face he would know that I was there with him.
And there in that awful room, I fixed my eyes on his beautiful face and suddenly I realized I had no words in me for him. I had nothing to say and I was horrified by that realization. So, stricken and mute, and not wanting to fail in that moment between us, through tearful eyes and my very best feigned smile in a gaze that was uncomfortably long and awkwardly silent, I simply opened my mouth. And as I did quiet, gentle words fell out. . . . I simply said, 'I love you so much.' Slowly scanning my face as if to memorize it for another time when he could see it no longer, Josh let his gaze fall back onto my eyes as he mouthed back the words, 'I love you, too.' Josh died after having to say goodbye to dozens of friends and close family with a muted voice and mouthing the words, unable to draw a breath to even whisper his farewells.
Health care-associated infections represent an American health care disgrace that is killing us and our families unnecessarily. This is unacceptable and cannot stand. I speak now to caregivers everywhere within the sound of my voice, to you nurses and doctors and ICPs, and you the administrators and care managers, and everyone directly or indirectly associated with the delivery of health care. I often think back on that sad day, the saddest day of my life thus far, when I could barely think clearly enough to formulate or speak meaningful words to a dying son who should not have been dying at all. This has transformed me into a woman on fire. The devastating experience of the loss of our son has since lodged solemn, compelling, and significant words into my mouth that I feel obligated to speak aloud for myself and for Josh and for patients present and future.
Please listen carefully because I am here at great personal cost and because of unimaginable loss that I will never recover from. You hold in your hands the power every single moment that you care for a patient to initiate awesome events far beyond anything you can even think of or dream. Because what you do for a living matters. What you do is important and how you deliver care has meaning, enormous impact, with far-reaching consequences in ways you will never know, profoundly touching patients like Josh and families like mine forever. I ask you to consider the potential consequences of simply washing or sanitizing your hands in delivering care and the manifestation of what that one seemingly small step can mean to one family like mine and the fate of the whole world. One person lives because of you, and all that they contribute after that is because of you. Change one thing. Change everything. It's true. I would like for you to consider the far-reaching consequences and the repercussions of assuming the role of champion of best hand hygiene practices and infection prevention on your floor and within your hospital. You hold great potential to save a person's very life in the power of that one action.