published Friday, September 27th, 2013

North Georgia girl, 4, battles rare kidney syndrome

This is a photo of the bacteria that causes hemolytic uremic syndrome, a rare disease that follows e-coli-related illness and can cause anything from blindness to kidney failure and even death.
Photo from Centers for Disease Control and Prevention
This is a photo of the bacteria that causes hemolytic uremic syndrome, a rare disease that follows e-coli-related illness and can cause anything from blindness to kidney failure and even death. Photo from Centers for Disease Control and Prevention

SYMPTOMS OF HUS

Around 5–10 percent of those who are diagnosed with Shiga toxin-producing E coli infections develop a potentially life-threatening complication known as hemolytic uremic syndrome. Clues that a person is developing HUS include:

• Decreased frequency of urination.

• Feeling very tired.

• Loss of pink color in cheeks and inside the lower eyelids.

Persons with HUS should be hospitalized because their kidneys may stop working and they may develop other serious problems. Most persons with HUS recover within a few weeks, but some suffer permanent damage or die.

Source: U.S. Centers for Disease Control and Prevention

A RUN FOR EMMA GRACE

What: A one-mile “color run” to raise money for the Madaris family. Participants will wear white clothes and get splattered with corn starch tinted with food coloring as they run by.

When: 8 a.m. Saturday

Where: Saddle Ridge Elementary and Middle School, 9858 North Highway 27, Rock Spring, GA 30739

Cost: $10 to run, $12 for T-shirts and $5 for sunglasses. Registration will begin at 7 a.m.

Amber De Vaux Madaris had never heard of hemolytic uremic syndrome, a rare consequence of food poisoning that is the single biggest cause of acute kidney failure in children.

But Madaris knows about it now. She and her husband, Dustin Madaris, have spent almost all of September living at Children’s Hospital at Erlanger to be near their 4-year-old daughter, Emma Grace, who developed the syndrome after an E. coli infection.

“We haven’t left her side,” said Amber Madaris, of Chickamauga, Ga. “It’s been a big nightmare.”

Emma Grace is improving now, but she spent 22 days in intensive care. Both her kidneys shut down, requiring dialysis. She also needed blood transfusions, her mother said, and had a feeding tube inserted into her stomach.

“Emma Grace drank 43 oz yesterday and her goal today is 48 oz,” Madaris wrote Wednesday on her Facebook page. “A BIG IF is if her labs trend better over the next several days she can go home, but will still need to come back to the hospital twice a week for dialysis and then she will have a final surgery to remove the tube in her stomach.”

Work has been put on hold for the couple. Amber Madaris does marketing for All Things Personalized, a Fort Oglethorpe business specializing in customized items, and Dustin Madaris is a physical education teacher at the just-opened Saddle Ridge Elementary and Middle School in Rock Spring, Ga.

“We have been able to be with her 24 hours a day,” Amber Madaris said.

The couple, who have an older son who has stayed with family, wouldn’t sleep in the 26-bedroom Ronald McDonald House near the hospital because they didn’t want to be that far from Emma Grace.

“It’s been traumatic,” Madaris said. “But God is good, and he’s definitely helped us through it.”

Emma Grace and a Catoosa County, Ga., resident — whose age, gender, and condition aren’t being released — each contracted hemolytic uremic syndrome after food poisoning. It can strike adults, too. While adults are less likely to develop the syndrome, they’re more likely to suffer long-term problems from it.

The Walker and Catoosa cases among only eight cases of the syndrome reported in the entire state of Georgia in 2013, said Logan Boss, spokesman for the 10-county Northwest Georgia Public Health District.

“So far, we see no connection between the two,” Boss said. “We hope to be able to trace it back [to the source]. Sometimes you can, sometimes you can’t.”

Shiga toxin

Hemolytic uremic syndrome has claimed lives in high-profile food poisoning cases, including a 2011 outbreak in Germany in which contaminated sprouts from an organic farm were blamed for carrying a strain of E coli that sickened close to 4,000 people and killed 53.

Escherichia coli bacteria, named after German pediatrician Theodor Escherich who discovered the strain, normally live in the intestines of people and animals. Most E coli are harmless and are an important part of a healthy human intestinal tract, according to the U.S. Centers for Disease Control and Prevention.

What many deadly bacterial strains have in common is that they produce Shiga toxin, a potent poison that’s lethal in even tiny doses. It’s named for Kiyoshi Shiga, a Japanese physician and bacteriologist.

Shiga toxin-producing E coli was identified in the Walker County HUS case, which was reported Sept. 4, Boss said.

Citing federal medical privacy law, Boss wouldn’t release any information about the two HUS victims. But he said hospitals and healthcare providers must report HUS cases within 24 hours, and the 4-year-old Walker County girl was hospitalized on Sept. 3.

Lab tests didn’t find any E coli in the Catoosa County HUS case reported Sept. 6, Boss said. However, Shiga toxin type 2 was detected.

“So Walker was E coli; Catoosa wasn’t,” Boss said.

Some Chattanooga-area news reports incorrectly identified fast food as the culprit, he said. Health officials don’t know what caused the Northwest Georgia HUS cases. Amber Madaris said she and her husband don’t want to speculate about where Emma Grace may have contracted her infection.

“It’s still under investigation,” Boss said.

Eating raw hamburger ‘crazy’

People can take steps to reduce their chance of getting an E coli infection. The CDC recommends that people wash their hands after going to the bathroom or changing a baby’s diaper, cook meat thoroughly, avoid unpasteurized dairy products and raw milk, try not to swallow water when swimming and prevent cross-contamination from raw meat by washing cutting boards.

“You can take reasonable precautions,” said Dr. Beth Piraino, president of the National Kidney Foundation. “I think people who eat raw hamburger — they’re crazy. They’re out of their mind.”

Still, with such a wide range of potential sources, a CDC website about E coli states that “almost everyone has some risk of infection.”

An estimated 265,000 Shiga toxin-producing E coli infections occur annually each year in the United States, and around 5 to 10 percent of those diagnosed with one go on to develop HUS, the CDC website states.

“It’s bad,” said National Kidney Foundation spokesman Dr. Leslie Spry. “If you start seeing bloody diarrhea, especially in kids, that’s a reason to get very concerned.”

Amber Madaris said her daughter was perfectly healthy before getting HUS. The Madarises first thought a stomach bug caused her vomiting and diarrhea. They took Emma Grace to the hospital when her symptoms got really bad.

Most children recover after undergoing treatment that can include kidney dialysis or blood plasma replacement — but some suffer after-effects such as blindness, seizures, permanent kidney failure requiring lifelong dialysis — and 3 to 5 percent die.

“The good new is, the majority of these patients recover and recover well,” said Dr. Mihail M. Subtirelu, who practices pediatric nephrology at Children’s Hospital at Erlanger.

Contact staff writer Tim Omarzu at tomarzu@timesfreepress.com or 423-757-6651.

about Tim Omarzu...

Tim Omarzu covers Catoosa and Walker counties for the Times Free Press. Omarzu is a longtime journalist who has worked as a reporter and editor at daily and weekly newspapers in Michigan, Nevada and California. Stories he's covered include crime in blighted parts of metro Detroit and Reno, Nev.; environmental activists tree-sitting in California's Sierra Nevada foothills; attempts by the Michigan Militia to take over a township¹s government in northern Michigan. A native of Michigan, ...

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