MURRAY — Amanda Grow was due to deliver her fourth baby in just two weeks, but instead ended up fighting for her life — a life she still struggles to fully live even a year later.
"Going from relying on other people checking on you and regulating your care to relying on yourself is just such a profound, dramatic switch," the 34-year-old mother of four said Wednesday. "There were, and still are, times I wasn't quite sure how to take care of myself."
Researchers at Intermountain Medical Center, along with others throughout the country, want to make the transition to "normal life" better for survivors, or people they call "graduates" of the intensive care unit.
"The process of recovery from a life-threatening illness is a long, slow road with a lot of peril associated with it," said Dr. Samuel Brown, a pulmonary intensive care doctor and director of the Center for Humanizing Critical Care at Intermountain. "We could do a better job of addressing that."
The center is collaborating with the George E. Wahlen Department of Veterans Affairs Medical Center in Salt Lake City, as well as hospitals in Baltimore, Nashville and Boston to study what health care providers can do to make life after a particularly traumatic hospitalization better and more "normal" for patients.
So many patients who experience the intensive care unit grow to depend on the health care teams that ultimately saved their lives. Yet, when they are discharged from the hospital and typically have little contact with any of those same medical professionals, they can feel abandoned.
"For many of us scientists and physicians and other clinicians in this area, there was a moment that we had in our careers when we suddenly felt in our souls the sense of abandonment that our patients had," Brown said. "We’ve historically told ourselves the story that we’re the heroes, we’re the superheroes. We come in in our capes and run life support systems — we retrieve life from the jaws of death and we walk away."
He wants to do more for those people with whom an indelible bond is forged after they seemingly conquer death together.
"There's a sense of moral clarity that comes when you realize that the people you've saved are still struggling and the system isn't listening," Brown said. "We felt driven to try to walk with, in an ongoing way, patients and families."
While Grow isn't part of the ongoing, three-year study at Intermountain, she is the exact type of person who might benefit from it, as she faced a steep learning curve when she returned home after the intense trauma she experienced.
Grow, of Bountiful, had to dissolve the family business she had worked hard for years to build, learn to depend on numerous others for care, and has yet to regain mental and emotional stability stemming from her near-death experience that began with the emergency cesarean section to deliver her now 1-year-old son, Thayne.
She sometimes even feels guilty or confused about being alive and can barely recall the series of events that put her in the intensive care unit at Intermountain Medical Center for two weeks more than a year ago.
"In so many ways, other than some crazy scars, I am physically well," Grow said. "Mentally and emotionally, however, I'm forever changed."
After the emergency C-section, Grow unexpectedly experienced an amniotic embolism — a very rare but life-threatening complication of childbirth. Amniotic fluid spread throughout her body, triggering a disastrous series of events, including a necessarily massive blood transfusion of more than 75 units of blood and platelets. Typically, a person of similarly small stature might have seven or eight units in their whole body.
The intense bleeding and resulting transfusion caused her lungs and other organs to fail initially and Grow was placed on a ventilator to help her breathe "while her body figured out what it wanted to do," said Brown, who treated Grow in the intensive care unit.
"I was trapped in a nightmare I could not wake up from," Grow recalls. She spent six days strapped to a bed in a medically induced comatose state.
For a while, doctors didn't know if she would ever wake up.
But Brown, who specializes in lung injuries, said waking up is the easy part. Recovery and all the complications that come with it, he said, is where the real work begins for the patient — particularly patients with acute lung injury, which is the focus of the Intermountain study.
Acute lung injury and respiratory distress are especially devastating and can be caused by pneumonia, infection through blood and blunt force trauma. Brown said people who suffer from it are at high risk of coming back to the hospital after discharge.
"There's a host of ailments and injuries that happen as you're trying to keep a body alive so that the body can ultimately make a recovery," he said. "That kind of storm in the ICU leaves after-effects in a person's body that can take months, even years, to recover from."
"They almost died! And they're rebuilding a body and life after having almost died and it turns out they are very fragile," Brown said, adding that shock trauma caregivers across the country are working hard to cut down the readmission of patients who have already faced life-threatening conditions for other conditions that creep up during recovery.
"It's a very vulnerable group and it's a very vulnerable time of their lives," he said.
It will require proper and ongoing monitoring of medications, interventions during life-saving treatment to protect the brain, and, what local researchers at Intermountain are working on — organization and follow-through.
"We do a great job of getting people through the crisis, but a pretty poor job of supporting them through the long arc of recovery," Brown said.
While 80 percent of patients are eventually discharged alive from the intensive care unit, they face a high risk of developing complications like post-traumatic stress disorder (especially common if patients were on a respirator), problems with memory or strength, hospital readmission or even death.
Grow said she went home to kind and helpful family, friends and neighbors, as well as a newly renovated home. Her baby was released at the same time as she was, which was convenient, but also difficult at times.
And, even though everything was clean and new, Grow struggled to understand her limits. Her brain function was temporarily changed by the heavy drugs used for sedation and otherwise. She worried about becoming dependent, among other things.
"I think you don't even have time or space to mentally process what has happened to you while you are in the hospital," Grow said. "It really isn't until you get home that you even start to understand the gravity, the huge life event that happened, and all the ways it impacted you and your family."
Unlike most patients released from the intensive care unit, Grow had a nurse who routinely visited for wound care, but was helpful for other things as well. Grow appreciated the contact with someone who knew her plight.
Expectedly, the whole experience reshaped her life.Comment on this story
"I emerged as a person who could function in the world," Grow said. "But, I had to grieve the person that I was."
In some ways, that grieving will continue. She said she learned the hard way that "we don't control life or death. We don't have that much control over what really happens."
She's grateful doctors at Intermountain are concerned with the well-being of patients even after they are released from the hospital.
The United States Department of Defense is funding the study, as results may impact service members as well as civilians.