Her lungs were mysteriously closed.  How did this happen?

Her lungs were mysteriously closed. How did this happen?

The 21-year-old sobbed as she read the headline: “The 16-year-old who walks and eats tacos while supporting her life.” She scanned the article about a girl with a mysterious disease that ravaged her lungs and now needs a breathing machine for her. “I want to do something,” she said to herself as soon as she finished the article. She thought she knew what was killing this little girl, because the story could have been her own, six years ago.

At that time, she was a high school student in the starting lineup for the girls’ 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, Minnesota, discovered she had some form of viral infection and predicted that she would feel better after a few days of rest. was wrong. The fever was gone but was replaced by the most extreme tiredness a girl had ever known. Just getting out of bed made her hold her breath. Her mother took her to the nearest emergency room, 25 miles away.

As the nurse checked the young woman’s vital signs, she seemed alarmed. The patient’s oxygen saturation, which is usually more than 90 percent, in the 1960s, was dangerously low. The nurse put an oxygen mask on her nose and mouth and contacted the doctor in charge. A chest X-ray showed a gray cloud invading her lungs. Minutes later she was in an ambulance bound for Sanford Medical Center in Fargo, ND, the nearest hospital with a pediatric intensive care unit.

In Fargo I started taking several broad-spectrum antibiotics. Doctors there didn’t know which insect caused this pneumonia, but until they did, they discovered that these antibiotics should protect her. But she continued to deteriorate, and within days she needed a ventilator.

When that wasn’t enough, doctors at Sanford called the Mayo Clinic in Rochester, Minnesota. Eight days after she entered the emergency room, the patient’s lungs were barely working at all. The next step was an artificial heart-lung machine known as ECMO – short for extracorporeal membrane oxygenation. This device, about the size of a refrigerator, acts as a lung to remove waste carbon dioxide from the blood and replace it with oxygen and then as a heart to recycle the oxygenated blood back through the body. The ECMO team from Mayo Clinic traveled to Fargo with their devices, attached the young woman to the device and returned with her to Mayo Clinic Hospital. This machine breathed her for 116 days.

Like the girl in the article, she too was walking attached to the huge machine. She also ate while on the machine, but not the tacos. The first thing that passed on her lips was the communion chip when she finally felt well enough to walk at least part of the way to the hospital chapel surrounded by a group of doctors, nurses, and technicians. They never discovered why her lungs failed. She spent months on the transplant list, waiting for a new heart and lungs to replace the ones her doctors thought would never recover. But they did. Finally, after seven months in the hospital, I was able to go home.

For several years after that, she returned to Mayo every six months for a check-up. During those visits, she would always stop by the pediatric intensive care unit to see the nurses who had become her second family in the months near death. At one visit, two years after her time in the hospital, several nurses told her about a child whose illness seemed remarkably similar to hers.

Hours later, she and her parents met this child’s parents, who told the story of their daughter, only 12, whose lungs simply stopped working after what looked like a viral illness. The families compared the notes to see if there were any similarities between the two children’s lives and exposure. They lived in different environments – one rural and one urban – in different parts of the state. Nothing seemed to match, until the baby’s parents finally reported that in the weeks before coming to the hospital, their daughter was taking an antibiotic: trimethoprim-sulfamethoxazole (TMP-SMX), better known by the brand name Bactrim. The young woman gasped. She was taking this antibiotic (in her case for acne) – until the day she went to the emergency room

Since then, another family has called her a familiar story: a healthy, active teen gets very sick, with his lungs so damaged that he needs life support. I asked these parents if their son took TMP-SMX when he fell ill. Yes, came the wonderful response. This made a total of three boxes. Maybe you found a real relationship.

And now this young woman has appeared in the news. Her name was Zei Uwadia. The article mentioned that Dr. Gina Miller is a pediatric intensive care specialist at Children’s Mercy Hospital in Kansas, Missouri, who was caring for Wadea. The young woman found an email address for the doctor and immediately sent her a note. “I started taking Bactrim for acne about 3-4 weeks ago [my] “Acute pulmonary failure,” she wrote. “This happened to at least three kids between the ages of 12 and 20 [old]. …the similarities between our cases are curious.” I asked if Uwadia had taken TMP-SMX as well.

Miller was surprised. In fact, the girl was taking TMP-SMX when she got sick. Could there be a link? Miller reached out to her friend, Dr. Jennifer Goldman, who was a pediatrician trained in infectious diseases and clinical pharmacology. She has been doing research on adverse reactions to this drug for years. TMP-SMX is an effective, safe and inexpensive drug, which is why it is the sixth prescribed antibiotic in the country. It may be a coincidence that these four people, a tiny fraction of the millions who take this drug on any given day, fell ill. However, doctors agreed that an investigation was needed. The pediatrician collected the medical records of the patient who sent the email and other cases she found. They were all healthy young adults who developed a devastating lung injury after a brief, flu-like illness often with a fever, sore throat, or cough. And all of them took TMP-SMX.

What convinced doctors of a link were biopsies of the affected lungs. Each showed the same unusual pattern of focused destruction: the only cells affected within the lung were those in which carbon dioxide had been absorbed and oxygen supplied – cells that do the most important work of respiration. In two, including the patient who noted the connection between her illness and the drug, these core cells eventually grew, allowing her to breathe again on her own. Others whose lung tissue has not recovered will need a lung transplant. Of those first cases, two died: the 12-year-old the young woman met in May and O’Day, the girl in the news story.

In the four years after Miller received the patient’s email, she and Goldman identified a total of 19 patients, most under age 20, who developed this reaction after being treated with TMP-SMX. Six died. It is still not clear how the antibiotic causes this rare and devastating destruction. Goldman thinks it might be some kind of allergy. But they still couldn’t predict who was at risk, or why.

As an ICU physician, Miller tells me she uses this medication frequently. Although such cases are rare, the devastation they caused is horrific. “Most of these people did not receive treatment for a life-threatening illness, yet they were given this regular medication — and it ended or changed their lives forever,” she says, referring to the 19 cases.

This original patient shares Miller mixed feelings. She is now 26 years old and is a nurse caring for patients who have just had a heart and lung transplant. She regularly gives her patients TMP-SMX. And they need it – to treat the ailments they suffer and to prevent the ones they may contract. However she knows that because of her reaction to this drug, her lungs will never be the same. She can play a friendly game of volleyball but explodes after climbing several flights of stairs. Still, she has a good life. She is proud that she has made a contribution to science and hopes that one day it will prevent it from happening to anyone else.

Lisa Sanders is a contributing writer for the magazine. Her latest book is “Diagnosis: Solving Medical’s Most Perplexing Mysteries”. If you have a resolved issue that you want to share, write to Lisa.Sandersmdnyt@gmail.com.

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