Experimental drug, persevering hospital staff help baby overcome rare disease
I first started at the Bemidji (Minn.) Pioneer as an intern in the summer of 1996. That would begin six years as a news reporter, sports reporter and copy editor for a small, six-day-per-week daily newspaper in northern Minnesota. I wrote a large range of stories from multiple beats, to features to sports, my favorite being the coverage of the Red Lake Reservation High School basketball team named the Warriors. Here is a collection of my stories from my time at the Pioneer.
Dec. 26, 1999
By Devlyn Brooks
For most, Christmas is a time of thankfulness. But for one Bemidji family, Christmas will always be something just a little more than that. For Sarah and John Paul, Christmas is the day their baby's life was saved.
The Pauls' eight-day medical mystery/miracle began just a few short days prior to Christmas, 1998. In fact, the family had been planning for one gathering in Clearbrook at Sarah's mother's home and another at John's dad's in Sioux Falls, S.D.
But Sarah's thoughts of her 5-month-old daughter, Amelia's first Christmas were all but dashed on Dec. 18, 1998, when the baby grew listless and stopped reaching for her toys.
"It was getting to be weekend, and we were going to my mom's. I thought (Amelia) was getting a cold," Sarah said of the afternoon that changed her life. "She had a dry, raspy throat, and she had dry diapers for hours."
The Pauls did travel to Sarah's mother's house that weekend, and Amelia's condition continued to worsen. Soon, Amelia not only wasn't playing, she was hardly moving and wasn't eating.
On Monday morning, John, 24, and Sarah, 23, brought their daughter to see Dr. Maria Statton -- their family doctor -- at North Country Regional Hospital in Bemidji.
At the hospital, the Pauls learned that Amelia had lost almost a pound in just a couple of days, and so she was quickly admitted for dehydration. The Pauls' worst fears were coming true.
The next morning, Dec. 22, Amelia was completely limp. The hospital pediatrician was consulted, and he suspected she had a rare disease known as infant botulism.
Doctors can't determine what causes infant botulism, and it can be deadly. In Minnesota, according to Sarah, about five cases have been reported in 25 years, with only 100 being reported annually nationwide.
That day, NCRH staff talked with a pediatrician at Children's Hospitals and Clinics-St. Paul. The doctor then came back to Amelia's room, where he told Sarah and John a helicopter was en route, and their baby would be airlifted to the Twin Cities in 40 minutes.
"I think that was the only time I really cried the whole week," Sarah said. "That's when I was scared."
After hustling through the wintry, Minnesota night, the Pauls arrived five hours later -- about midnight -- at the hospital in St. Paul. For various reasons, it isn't good for others to ride with the patient in the helicopter.
Amelia, already at the hospital for hours, had already underwent a battery of tests. "(The doctors) were thinking that botulism was the problem, but it was so rare they couldn't rule out other diseases," Sarah said.
Although there is a test for botulism, it takes days, and the hospital staff said Amelia didn't have that much time. So, instead, the doctors did tests to rule out everything except for botulism, according to the Pauls.
On the next day, Dec. 23, more tests were done, and late that night a pediatric specialist said test results showed a problem with communication between Amelia's nerves and muscles, meaning the diagnosis was botulism.
In adults, there's an antitoxin for botulism, but in babies it can cause severe, negative side effects. Amelia's chances, it seemed, hung on one ray of light -- an experimental drug offered only by the California Department of Health Services.
The problem is much red tape exists in obtaining an experimental drug. Permission had to be granted from the federal Food and Drug Administration, which oversees drug production in the United States, Amelia's hospital and the California Health Department.
The hospital staff needed to compress into hours a process that normally takes days or weeks. To make matters worse, it was Dec. 23, with Christmas Eve the next day bringing the closing of many offices. The final hurdles was that Amelia's one, needed dose of the drug would cost $23,000.
Early the next day, the hospital's team urgently went to work, meaning many of the key people were pulled away from their holiday celebrations. The team made more than 20 calls to the FDA, California Health Department and to their own hospital staff to coordinate getting the drug.
At 4 p.m., on Dec. 24, the last form was faxed, and Amelia's only remaining lifeline was rushed to a waiting airplane somewhere in California.
About midnight, the drug arrived at the St. Paul hospital, and by 12:30 a.m. -- Dec. 25 or Christmas Day, 1998 -- the drug was running through Amelia's intervenes lines as she peacefully slept.
Amelia's condition then steadily improved. She left the hospital six days later on New Year's Day. A year later, Amelia is in great health, suffering only a few months of constipation after the disease.
And the Pauls are once again planning for the future, when John plans to graduate from Bemidji State University and become a police officer, and when, maybe, Sarah may go to school to become a doctor.
"Normal days are harder than the days during Amelia's disease, because during that (time) all you have left is your faith," Sarah recently said about that week. "I think (Amelia) thought she would be OK. And we knew what is best would happen.
"Was it a miracle? It depends on what miracle means. Maybe at those times people believe more in miracles," she said, "because that's all they have. I think it was an example of getting people together and seeing what they can do together. If people thought that was every day, we could do more for each other. People try to do everything on their own. It was a good Christmas lesson."
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