After all that’s happened, Tony Sterle still remembers his wife, Annie, walking down the stairs holding the results of her pregnancy test. Nine months later, Annie’s labor was induced. At first, she appeared healthy. As her labor progressed, she lost consciousness.
“I'll never forget watching that — the life just drain out of her eyes like that, and the baby's vital signs were plummeting. And so, I started saying, ‘Hey, we need to get help in here right now.’”
Their son, Henry, was delivered by an emergency cesarean section. While Annie’s health care team worked to treat her for massive blood loss, cardiac arrest and respiratory failure, Tony met their son. He was in the neonatal intensive care unit on a ventilator. Later, Tony was brought in to see Annie. An advanced form of life support was doing the work of her heart and lungs.
“I remember when I saw her, I just broke down crying. She was unconscious, she was on a ventilator. She was very swollen … She had tubes, these large tubes running out of her. I mean, it was just, it was just horrible,” he said, recalling that day in 2020.
Every year, hundreds of patients die in the U.S. from complications of pregnancy and childbirth. Amniotic fluid embolism is one of the rare complications, occurring in roughly three out of every 100,000 births.
Annie Sterle survived an amniotic fluid embolism. She was in a coma for 16 days. She emerged unable to move parts of her body, unable to communicate, with a tracheostomy tube to help her breathe.
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“I had had a shower of strokes throughout my brain,” Annie said. “I couldn’t talk … I couldn’t write because my right arm was paralyzed from the strokes.”
Amniotic fluid embolism (AFE) occurs during labor or shortly after birth, when the body reacts to amniotic fluid and fetal cells that enter the bloodstream. Patients can lose consciousness, and experience life-threatening issues with blood clotting and hemorrhaging — profuse bleeding — cardiac arrest and respiratory failure. The brain is deprived of oxygen, which can cause neurologic injury, too.
Miranda Klassen had an amniotic fluid embolism while giving birth to her son more than a decade ago. She established the AFE Foundation to facilitate research, and to support grieving families. Now, a patient registry she helped build has medical information from 200 patients including many who survived. Klassen estimates that an average of one to two cases of AFE might occur in Minnesota, each year.
“Our biggest goal is to be able to identify who's at risk for it, to be able to predict it, to better understand what it does in the body so we can treat it and essentially save the lives of mothers and babies,” Klassen said.
With protocols in place, outcomes for patients and newborns have improved over the years. Patients die in roughly 20 percent of cases. Some researchers estimate that the fatality rate is still much higher.
Dr. Michael Samara, a cardiologist specializing in advanced heart failure at Abbott Northwestern Hospital, was a part of Annie’s medical care team. He remembers Annie as a resilient, determined patient. He also remembers her care involved nearly 100 providers, from physicians and nurses to respiratory therapists, spanning a dozen different disciplines.
“When patients are so sick, like she was, it really just impressed upon me, something I already knew, but just the magnitude that I maybe didn't recognize — how many people have to be working together, dovetailing their expertise together to have somebody have such a good outcome like she did,” Samara said.
Between 2011 and 2020, eight counties across the state lost in-hospital birthing services, according to the Minnesota Department of Health. Dr. Sarah Cross, a University of Minnesota professor, said the lack of predictors for amniotic fluid embolism is problematic for patients who live far away from well-equipped hospitals.
“A lot of times, labor and delivery is viewed as a place where healthy people go to have a baby,” she said. “The truth is, catastrophic things can happen there.” Hospital systems need support to manage those events, when they occur, Cross said.
“We have to do the right thing within the first few minutes. And if we don't have the right equipment or the right personnel or people aren't trained properly, then we'll have catastrophic outcomes. So, while that's a rare event, we need to be ready for it at all times.”
‘You have to take care of you’
Annie has made a full recovery. She’s returned to work. Henry, a happy toddler, collects school buses, and delights in books, puzzles and toys.
Annie, Tony and Henry enjoy these activities together, as a family.
“I just wanted to pause time, because he was so sweet,” Annie said about Henry, now 2 years old. “And he’s learning to do things himself. Like, he’s just becoming a little kid.”
Getting here was hard.
Annie met Henry for the first time a week after she woke from her coma; fear of coronavirus at the start of the pandemic made Annie’s recovery isolated, with limited visitation from her family. When Annie was discharged from the hospital, Tony was Henry’s primary caregiver. Her doctor told her that she couldn’t yet get up with Henry in the middle of the night, that she had to prioritize her own rest.
“[The doctor] said something along the lines of, ‘Your son is so lucky, he gets to have his mother, you're here and he gets to have his mom. And that wasn't the case, a month and a half ago … You have to take care of you.’”
Research and blood drives
With early diagnosis crucial to survival, researchers are trying to find a biomarker for AFE to determine why it happens.
Dr. Irene Stafford, a maternal fetal medicine specialist at the University of Texas Health Science Center in Houston, has specialized knowledge of amniotic fluid embolism. “It would be the most impactful research … to actually find out: Is there a risk factor? Is there a biomarker? Is there a diagnostic test? Perhaps I can shed some light on the pathophysiology of why this is even happening to some of these women,” Stafford said.
With support from the AFE Foundation, Stafford said they are close to finding a biomarker for amniotic fluid embolism. The biggest barrier right now, she added, is in getting specimens from enough patients.
“I am desperate for answers around why this happened to me,” Annie said, adding that it can be difficult to raise awareness and gather enough resources to address medical conditions that are rare.
She said the AFE Foundation supports research efforts with help from families — “whether it's grieving families who have lost a mother or a baby, or survivors.”
“I had a massive blood transfusion, and one of the ways that you can kind of give back is through a blood drive.”
This winter, Annie organized a blood drive with the Minnesota chapter of the Red Cross and two of her friends — all three of them survived amniotic fluid embolism.
“We’re all still here,” Annie said.