Parents and clinicians reflect on the experience of helping kids fight sepsis.
By Darcie Reeson
Victoria, age 6, who was playing with friends one day, showed signs of a virus the next.
Six-year-old Victoria was doing cartwheels with neighborhood friends on a Saturday night. When she woke up the next morning with what looked like a virus, her mom, Judith, wasn't too concerned. But by Monday, Victoria's fever remained high. She was having trouble breathing, which alerted an urgent care physician to call 911. Little did her family know, she was already in the fight of her life.
Sepsis, a life-threatening complication from an infection, comes disguised as many things. For families, the experience often starts in the doctor's office, urgent care or emergency room with a simple statement, "Something isn't right."
For clinicians, subtle symptoms of common illnesses—a cold, a cough, a fever—could signal sepsis. Families, many who have never heard the word sepsis, are on the front lines with clinicians as it runs its frightening course in their child.
And because they know their child best, families are influencing clinical practice at children's hospitals across the country. Open communication between clinicians and families is important, and in the Improving Pediatric Sepsis Outcomes collaborative, clinicians are turning to parents as partners in early recognition and treatment. Factoring in their perspectives early and often has the potential to improve outcomes.
"Even something as seemingly insignificant like, 'He doesn't usually look that way,' can trigger us to look deeper," says Christiane Corriveau, M.D., pediatric intensive care physician at Children's National Health System in Washington, D.C. "We need to have our ears open to hear these things and integrate them into the formula of what could be going on.”"
Here's what it's like for the clinicians working in the collaborative, as parents reflect on the intense experience of watching their child beat sepsis.
They said it was pneumonia
At the urgent care facility, Victoria had tested positive for influenza A and strep A. Then, after arriving at the hospital's emergency department (ED), Victoria was diagnosed with pneumonia; her heart rate was high and oxygen levels were low. Doctors put Victoria into an induced coma and administered antibiotics.
But the antibiotics weren't effective, and her organs began to fail. She was going into septic shock—the strep had moved into her blood. Victoria experienced three cardiac arrests, two in the ED and one in the intensive care unit (ICU), before the care team stabilized her. Her heart rate and fever remained high.
Within 48 hours, Victoria was transferred to Holtz Children's Hospital at the University of Miami/Jackson Memorial Medical Center, a hospital that offered extracorporeal membrane oxygenation, or ECMO, a therapy that would save Victoria's life.
"The doctors there were very educated about sepsis and took time to explain what was happening to my daughter," Judith says. "The PICU nurses were vigilant and alerted me whenever something changed. Their preparedness and knowledge saved my daughter's life."
After more than 17 days on the ECMO machine, 10 days longer than the average treatment, Victoria began to recover. She underwent three months of rehabilitation in the hospital and continued physical therapy long after.
Judith says she learned a valuable lesson as a parent. "Listen to what your child is telling you. Victoria was complaining her legs and belly were hurting. I thought, 'Oh, it's probably the Tylenol.' By Monday, I knew something was wrong."
Victoria's story is a familiar scenario for children's hospital physicians, who see children when sepsis has progressed to a dangerous level. Providers in critical care depend on colleagues in other areas, like the ED, to recognize sepsis early, which can be difficult to do.
"That illustrates the critical importance of having a consistent, systematic approach to recognizing sepsis," Corriveau says. "Clinicians in every area need to look at it with the same eyes and same suspicion. We should all be on the same page so we don't have a delay in recognition or transfer to the ICU. When it's really obvious, often it's too late."
We had to keep looking
At Mayo Clinic Children's Center in Rochester, Minnesota, Charles Huskins, M.D., vice chair of Quality, remembers another young girl admitted to the ED who had difficulty communicating her symptoms and pain. After a careful evaluation, lab tests and a blood culture came back negative. Additional imaging studies showed no abnormalities.
Several hours later, the patient's mother noticed a change in her daughter's mental status, which triggered the nurse to reassess vital signs and call in the team. She was deteriorating to severe sepsis.
"Everything looked fine in the ED other than the child appeared distressed, but every test we did was normal," Huskins says. "We couldn't find the answer." But hours later, another blood culture came back positive. The infection progressed rapidly.
"That's the dynamic nature of sepsis—it can turn quickly and appear differently in each child. We have to be vigilant and we have to assess and reassess," he says. "The input from the parents is critical—that's another flag something is wrong."
The patient survived sepsis because monitoring processes—and a strong partnership between parent and clinician—were in place to identify and manage the child's deterioration.
Treating sepsis means treating the source infection, such as urinary tract infections, central line-associated blood stream infections and pneumonia. As an infectious disease specialist, Huskins identifies the type of infection and recommends antibiotics that should be started to best treat it. Curative therapy is critically important, but it's just half of the equation.
Supportive care, like fluids, oxygen and blood products, tends to the patient's physical needs, while curative therapy is doing the work. And it takes a multidisciplinary team—from ED physicians, nurses, respiratory therapists, pharmacists and many others—to implement the assessment and treatment regime needed to prevent a patient from escalating from sepsis to severe sepsis or septic shock.
"You can't only treat the visible symptoms," Huskins says. "For example, just giving the patient blood pressure medicine isn't going to work—you have to treat the underlying infection, too. Teamwork is important for every step in the process, and so is having a complete package to guide therapy correctly every time."
No infection acts the same way
There are two primary reasons that sepsis in children presents such a challenge for physicians, Huskins says. The first is that things can deteriorate rapidly, even in otherwise healthy children, like Victoria. Clinicians need to be able to respond quickly and ratchet up the treatment response to support the child's specific situation.
For example, a key part of the sepsis collaborative is creating multidisciplinary huddles at the bedside to reassess each patient, get input from various people who know the patient, and quickly develop a beside action plan—including contingencies. Adopting this kind of systematic communication ensures all providers are working from the same information and can respond rapidly to changes while meeting patient needs.
"The response should be dictated by the child you're treating at that moment," Huskins says. "But we also need clear and consistent thinking about all the components that should happen to care for all patients with sepsis effectively. It's important to go up the scale of interventions. If you get a response, you can stabilize at that level. If not, you have proven interventions to scale up."
The second challenge is when sepsis strikes a child with underlying medical conditions. These patients have abnormalities at baseline, which means their average stats may not be the same as a healthy child. They are particularly vulnerable to infection and may not tolerate it or the treatment process because their body is already compromised.
When these patients develop new and concerning symptoms, physicians have to ask—are these symptoms related to what they already have, a complication of that condition, or something different?
In these situations, parents can be a valuable resource for clinicians. Parents can provide an important perspective by communicating what's normal for their child, which helps clinicians determine the probability of sepsis. This was the case of Chloe, a 12-year-old, non-verbal patient with autism and a seizure disorder.
Chloe, age 12, who has underlying medical conditions, developed a fever and had trouble breathing.
She looked like she had been sedated
When Chloe went from being tired after school to weak and unresponsive with a high fever, the Miller family knew something was wrong. "Even after we got her fever down, Chloe just wasn't herself," says her father, Mark. As parents of a child with complex medical conditions, he and wife Amy were very aware of changes in their daughter's health. At Children's National Medical Center, Chloe had low blood pressure and pale coloring.
The typically resilient pre-teen was having trouble breathing and was rushed to the ICU. "Chloe looked like she had been sedated even though she hadn't been," Mark says. "She didn't respond to things that normally would have been frightening and painful. That was scary."
Chloe developed sepsis as a result of having influenza A, pneumonia and strep throat at the same time. Although this can happen to anybody, it's more dangerous for individuals with underlying medical conditions.
That first night in the hospital was a flurry of activity, with doctors and nurses providing regular updates to the family. Mark and Amy told the care team Chloe previously had a bad experience with intubation, which typically is part of the supportive care process when treating sepsis.
The team was alarmed by Chloe's labored breathing, but they agreed to wait until absolutely necessary to intubate her. Fortunately, she was able to successfully breathe on her own the entire time she was in the hospital.
Corriveau saw Chloe in the PICU several hours after she arrived in the ED. "Her parents told us things we wouldn't have known otherwise, which ultimately affected her care," she says. "Kids come attached with families, so we need to help them be on the team."
Four days later, Chloe started to recover. The Millers worked closely with the medical team to explain her reactions and how she was feeling, and they participated in regular meetings with the care team. However, Mark recalls the team didn't mention sepsis until later.
"The word sepsis is scary, especially when you Google it," he says. "But having a diagnosis when we got to the ICU might have helped us understand the bigger picture of what was happening."
After an experience with sepsis, families wonder why physicians don't always mention sepsis in early conversations with them. Huskins acknowledges it is a term clinicians could use more often, but the emphasis is on treating the underlying problem.
"We tend to focus on the other aspects of care—high blood pressure or the infection that's leading to sepsis—and be as concrete as possible with families," Huskins says. "If another physician told me, 'We have a patient with sepsis,' I would ask, "'From what? What's driving the sepsis?' You need to get to the source and control it. That's an important element of the sepsis collaborative."
Everyone has a role
Sepsis is not a simple condition to understand. There's no one test that points to it. One thing every clinician can agree on is that a proactive multidisciplinary approach, coupled with family involvement, is critical to early recognition of sepsis and better outcomes. That's the foundation of the sepsis collaborative.
"One of our biggest challenges with sepsis is putting a name on it," Corriveau says. "And despite the science and antibiotics and great team dynamics in our day-to-day care, we still miss kids. But the sepsis collaborative challenges us to ask more questions, recognize the possibility of sepsis, break down silos across specialties and listen to the families. The interventions ensure we have the same focus and same reaction in all areas of the hospital and that these can be individualized to the needs of the child. These are the breakthroughs we can accomplish."
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