His lungs mysteriously closed. How could this have happened?

The 21-year-old gasped as she read the headline: “The 16-year-old girl who walks and eats tacos while on life support.” She skimmed through the article about a girl who had a mystery illness that destroyed her lungs and now needed a machine to breathe for her. “I have to do something,” she thought to herself once the article was finished. She thought she knew what was killing this young girl, because the story could have been hers, six years earlier.

At the time, she was a high school junior in the starting lineup for the women’s volleyball team. Just days into the new school year, she developed a fever of 103 degrees and a sore throat. Her doctor, in Thief River Falls, Minn., thought she had some type of viral infection and predicted she would feel better after a few days of rest. He was wrong. The fever disappeared but was replaced by the deepest fatigue the girl had ever known. Just getting out of bed left her breathless. Her mother took her to the nearest ER, 25 miles away.

As the nurse checked the young woman’s vital signs, she looked alarmed. The patient’s oxygen saturation, which would normally be well over 90%, was in the 60s, dangerously low. The nurse put an oxygen mask over her nose and mouth and contacted the doctor in charge. A chest X-ray showed that a gray cloud was invading his lungs. Minutes later, she was in an ambulance heading to Sanford Medical Center in Fargo, ND, the closest hospital with a pediatric intensive care unit.

In Fargo, she started taking several broad-spectrum antibiotics. The doctors there didn’t know what bug was causing this pneumonia, but until they did, they thought these antibiotics should protect her. But she continued to get worse, and within days she had to be put on a ventilator.

When that wasn’t enough, doctors at Sanford contacted the Mayo Clinic in Rochester, Minnesota. Eight days after arriving at the emergency room, the patient’s lungs were barely functioning. The next step was an artificial heart and lung machine known colloquially as ECMO – short for Extracorporeal Membrane Oxygenation. This refrigerator-sized device acts like a lung to remove carbon dioxide waste from the blood and replace it with oxygen, then like a heart to recirculate oxygenated blood around the body. The Mayo Clinic ECMO team flew to Fargo with their machine, strapped the young woman to the device, and returned with her to the Mayo Clinic hospital. This machine breathed for her for the next 116 days.

Like the girl in the article, she too had walked while connected to the huge machine. She too had eaten on the machine, but no tacos. The first thing that passed on her lips was a host when she finally felt well enough to walk at least part of the way to the hospital chapel surrounded by a team of doctors, nurses and technicians . They never understood why his lungs gave out. She spent months on the transplant list, waiting for a new heart and lungs to replace those her doctors thought would never recover. But they did. And finally, after seven months in the hospital, she was able to return home.

For a few years later, she returned to Mayo every six months for checkups. During these visits, she always stopped by the pediatric intensive care unit to see the nurses who had become a second family to her during her near-death months. During a visit, two years after his own hospital stay, several nurses told him about a child whose illness looked remarkably like his own.

A few hours later, she and her parents met the child’s parents, who told the story of their daughter, aged just 12, whose lungs had simply stopped working after what sounded like a viral disease. The families compared notes to see if there were any similarities between the two children’s lives and exhibits. They lived in different environments – one rural, one urban – in different parts of the state. Nothing seemed to fit, until finally the child’s parents reported that in the weeks before she arrived at the hospital, their daughter had taken an antibiotic: trimethoprim-sulfamethoxazole (TMP-SMX), known as brand name Bactrim. The young woman gasped. She had been taking this antibiotic (in her case to treat acne) – until one day she went to the ER

Since then, another family has contacted her with a familiar story: A healthy, active teenager becomes desperately ill, with lungs so damaged he needed respiratory support. She asked these parents if their son was taking TMP-SMX when he got sick. Yes, was the astonished answer. That makes a total of three cases. Maybe she had found a real connection.

And now there was this young woman in the news. Her name was Zei Uwadia. The article named Dr. Jenna Miller as the pediatric critical care specialist at Children’s Mercy Hospital in Kansas City, Missouri, who cared for Uwadia. The young woman found an email address for the doctor and immediately sent him a note. “I started taking Bactrim for acne about 3-4 weeks before that. [my] acute pulmonary failure,” she wrote. “It happened to at least 3 children between 12 and 20 years old [old]. … The similarities between our cases are troubling. She asked if Uwadia had also taken TMP-SMX.

Miller was surprised. Indeed, the young girl was taking TMP-SMX when she fell ill. Could there be a link? Miller contacted a friend, Dr. Jennifer Goldman, who was a pediatrician trained in infectious diseases and clinical pharmacology. She had been researching the side effects of this drug for years. TMP-SMX is an effective, safe and inexpensive drug and as such is the sixth most prescribed antibiotic in the country. It could be coincidence that these four people, a tiny fraction of the millions who were taking this drug every day, got sick. Still, doctors agreed they should investigate. The two pediatricians collected the medical records of the patient who sent the email and the other cases she had found. All were healthy young people who developed devastating lung damage after a brief flu-like illness often accompanied by fever, sore throat or cough. And all of them had taken TMP-SMX.

What convinced the doctors there was a link were the biopsies of the affected lungs. Each showed the same unusual pattern of targeted destruction: the only lung cells that were affected were those in which carbon dioxide was taken in and oxygen supplied – the cells that do the most important work of breathing. In two, including the patient who first noticed the link between her illness and the drug, these vital cells eventually grew back, allowing them to breathe on their own again. Others whose lung tissue did not recover needed a lung transplant. Among these first cases, two died: the 12-year-old boy whom the young woman met in Mayo and Uwadia, the girl of the news item.

In the four years since Miller received the patient’s email, she and Goldman have identified a total of 19 patients, most under the age of 20, who had this reaction after being treated with the TMP-SMX. Six died. It is still unclear how the antibiotic triggers this rare but devastating destruction. Goldman thinks it’s probably some kind of allergic reaction. But they still can’t predict who is at risk, or why.

As a critical care physician, Miller tells me, she uses this drug frequently. And although these cases are rare, the devastation caused is terrible. “Most of these people,” she says, referring to the 19 cases, “were not being treated for a life-threatening condition, and yet they were given this regular drug – and it ended their life or life. changed forever”.

This quirky patient shares Miller’s mixed feelings. She is now 26 and is a nurse caring for patients who have just had a heart-lung transplant. She regularly gives her patients TMP-SMX. And they need it — to treat the illnesses they have and to prevent the illnesses they might contract. Yet she knows that due to her reaction to this drug, her lungs will never be the same again. She can play a friendly game of volleyball, but gets out of breath after climbing some stairs. Still, she has a good life. And she’s proud to have made a contribution to science that she hopes will one day prevent this from happening to anyone else.

Lisa Sanders, MD, is a contributing editor at the magazine. His latest book is “Diagnosis: Solving the Most Baffling Medical Mysteries”. If you have a solved case to share, email her at Lisa.Sandersmdnyt@gmail.com.