Patient stories: MRSA is gut-wrenchingly humanized, and lawmakers are listening
'Behold, ye speak an idle thing, ye never knew the sacred dust. I do but sing because I must.'
Tennyson, In Memoriam
By Gary Evans, Senior Managing Editor
In numbers whose precise appearance veils the reality that they are estimates and underestimates at that the Centers for Disease Control and Prevention reports that 94,360 people in the United States acquired invasive MRSA infections in 2005 and 18,650 of them died.1 For the most part, the dead are nameless but to their families and friends. They are numbers in CDC surveillance data, extrapolations in the medical journals.
One of them was named Madeline "Maddy" Renee Reimer. She was born in Naperville, IL, on June 6, 2005, at 9:17 p.m., a twin weighing 4 pounds and 10 ounces. A little over six weeks later she was dead, her infant lungs ravaged by an invasive strain of methicillin-resistant Staphylococcus aureus (MRSA).
Infection preventionists, epidemiologists throughout the nation's hospitals, hold the discussion for an instant about how transmission occurred and whether the MRSA strain arose in the community or in the hospital. At the human level, it doesn't matter.
The epidemiology of such infections is rendered irrelevant by the tragic stories of MRSA victims and survivors. Their powerful narratives may do more to change the culture and practice of infection prevention in the nation's hospitals than a thousand reports to Congressional committees. Change is coming in infection prevention because from the patient's perspective a 300-page CDC guideline with a phone book of references is a doorstop indictment of an approach that has failed. A child is dead and her mother draws her breath in pain to tell her story.
"When they removed her from life support they warned us that she would only live for a few minutes," Beth Reimer tells Hospital Infection Control & Prevention. "My daughter actually lived for 13 minutes and I was able to hold her as she took her last breath."
Reimer is one of an increasing number of patients making their stories public, joining MRSA survivor and advocacy groups to demand change. State and federal legislators are listening, and at least one result is likely to be an increase in legal mandates to screen patients so they can be isolated before transmission can occur.
Madeline and her twin brother were born premature, with Maddy staying in the hospital NICU unit for three weeks due to apnea, Reimer says. Maddy had been home about two weeks after discharge when she developed a cold with a runny nose and a cough.
"So I took her to the pediatrician and they said it was viral and to let it run its course," she says. "That was on a Friday and on Sunday night I went to pick her up and she was limp and cold. I immediately knew something was terribly wrong. I called 911 and performed CPR on her. She was breathing, but very faintly."
Maddy was airlifted to a Chicago area teaching hospital and placed on life support. "They informed us the very next day that she had MRSA," Reimer says. "She had the sepsis type. She didn't have a boil or skin infection. It was actually in her bloodstream and it was affecting her lungs. They told us she was on the right medication and they were doing all they could do. Over the process of 11 days we watched our daughter deteriorate. They were doing lung x-rays and we could see each day that her lungs were being riddled with infection."
"When skies are grey"
On July 22 the doctors told the Reimer family that Madeline was losing her fight with MRSA. "We had a choice to keep her on life support and continue on this way or take her off," she says. "So we had to make the devastating decision to take her off of life support. Our families were able to come up and gather that day and spend a few precious hours. We sang songs to her like "You are My Sunshine." We were able to do imprints of her tiny hands and feet."
Meanwhile, the surviving twin and the entire family were tested for MRSA. "Everybody showed up negative but me," Reimer says. "I was colonized with it. I felt extreme guilt that maybe I had passed this on to her. I was in the hospital for a week [prior to giving birth] because my body kept trying to go into labor."
Thus, Reimer could have acquired the MRSA in the hospital and transmitted it to her daughter. On the other hand, she had an occupational risk for MRSA because she was a home health nurse. To completely complicate matters, she is not aware whether any strain typing was performed, so conceivably mother and daughter could have had different MRSA strains from different sources. In that regard, community acquisition post discharge cannot be ruled out either, though it seems less likely given her very limited outings and visitations.
"I will never know," she says.
Reimer is not bitter. She is focused on her family that now includes another daughter born after Madeline's death. That said, in telling her story she bears witness to apparent infection control lapses and asks the kind of basic questions that resonate with lawmakers and regulators.
"I watched many nurses touch my twins with no gloves on," Reimer says. "There should be accountability. I wish they would test health care workers for it and treat them. I know that the costs would be great because if they were positive they would probably have to take time off work. But I wish it would go in that direction and the healthcare industry would look at this and say, 'We have got to do something different.'"
Increasingly the difference is coming in the form of laws and regulations. In 2007, Illinois became the first state to require MRSA screening of hospital patients for MRSA infections. Similar patient screening and MRSA infection reporting laws are being enacted in other states, and many observers think national regulation is on the horizon.
"Illinois has become a leader with our legislation in the United States, but it's not enough," says Illinois state Rep. Patti Bellock, one of the sponsors of the state law. "We know it works. It can work better in the state of Illinois and it can work throughout the U.S. If countries in other parts of the world can do this, we can do it too. There is no reason why we should have to see people with such sad stories."
MRSA surpasses AIDS toll
As mentioned, the above cited CDC data represent an underestimate of MRSA mortality because the rearchers only captured invasive disease primarily via bloodstream infections.
"It's basically a blood culture study," says William Jarvis, MD, a former CDC outbreak investigator and now a private consultant with Jason and Jarvis Associates in Hilton Head, SC. "[But] you have MRSA surgical site infections and vent-associated pneumonias that lead to deaths. There are other MRSA infections that lead to death that were not captured in that study."
Of note, the CDC study drew some national attention because it included the finding that MRSA is now killing more people annually than HIV/AIDS in the United States. For the record, the CDC estimates that 17,011 people died of AIDS in 2005, and the disease, of course, remains a global scourge in areas without access to effective drugs and treatment options.
"How much awareness is there of AIDS?," Reimer exclaims. "We know so much about it. With MRSA, you don't really hear about it. I hope that things do change and it will probably take going state by state going through legislation about screening and reporting and all that. Then they will actually have the numbers to show that this is of epidemic proportions. That's when I think that the CDC will become more proactive. I don't blame the CDC. I don't hold them accountable, but I just wish..."
Her voice trails off in silent frustration, one felt by many MRSA patient advocates who cite common themes of decades of perceived inaction, a continuing dearth of data and statistics that are dubious even when available.
"Here we are in 2010 and they are supposed to be reporting it [in Illinois], but there is no actual reporting by hospital cases. They have a 'guestimate,' but they don't have a true actual number because it is not reported accurately," Reimer says. "We want the true numbers. On my daughter's death certificate nowhere does it say MRSA. It states that she died of necrotizing pneumonia. I know that she died due to MRSA. That needs to change. I've heard other stories where on the death certificate it does not say anything about MRSA."
Not surprisingly, MRSA patient advocates are particularly frustrated when they find out that hospitals typically follow what they perceive as complicated CDC guidelines that are voluntary.
"They have these handbooks of guidelines, but there is nothing that is truly being enforced," Reimer says. "I think the CDC is doing the best they can to educate about hand hygiene. But I don't think they are aggressive enough about actually trying to contain and control MRSA. That saddens me. Especially with these new forms of bacteria coming out that are resistant to all antibiotics."
MRSA has permanently changed Reimer, who admits to being obsessive and concerned when her children manifest even mild symptoms of any infection. "Going through something like that I knew it was either going to break me or make me," she says. "I'm a very passive, shy person, but I want this story to be told. I want people to be informed."
Reference
- Klevens RM, Morrian MA, Nadle J. Invasive methicillin-resistant Staphylococcus aureus infections in the United States. JAMA 2007;298:1763-1771.
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