“I don’t know where to stick her; she doesn’t have any veins left.”
That’s a medical specialist talking as she examined 3-year-old Jubilee Combs, a patient at a Kentucky hospital undergoing dialysis for a severe kidney disease acquired from drinking unpasteurized raw milk.
That was two years ago while the little girl was being treated for hemolytic uremic syndrome, commonly referred to as HUS. In Jubilee’s case, the HUS was the result of an E. coli infection from contaminated raw milk.
In HUS, damaged red blood cells clog the filtering system in the kidneys, which can lead to life-threatening kidney failure. In children, especially, it is often caused by infection from certain strains of E. coli.
Jubilee’s mother Sarah had not yet connected the dots between her daughter’s dire medical condition and raw milk.
“I knew there were naysayers and that there are some risks associated with raw milk,” she said.“But I had no idea about HUS.”
Sarah and her husband Brandon had decided to switch their family to raw milk because their oldest son had had some health issues. When they did, his health seemed to improve.
“The kids loved it,” said Sarah, talking about her other two children. “It seemed to be better for their immune systems. We drank it for five years. The kids thrived on it.”
The family also had complete faith in the dairy’s sanitary practices. In switching over to raw milk, they had been advised “to know their farmer.” They believed they had done the right research to make sure the milk they were buying was safe to drink.
But then one day, Jubilee got sick — very sick. She was vomiting and suffering from a severe case of diarrhea. Instead of improving over the next several days, she got sicker and sicker.
Her worried mother took her to the emergency room, taking along a pull-on diaper that had blood in it.
“I knew something was very wrong,” Sarah said, “but the doctor just told me to give her plenty of fluids and sent us home. He didn’t administer any kidney-functioning tests.”
The next morning, the toddler was sick enough that Sarah took her to a pediatrician, who ran some tests. Sarah said that the tests were likely done because one of the pediatricians in the office had two daughters who had contracted E. coli from a petting zoo.
“So the doctors were more alert to it,” said Sarah.
The next morning, the results of the tests came back. “It’s E.coli,” she was told. “Jubilee’s kidneys are in danger.”
In almost no time at all, the toddler was in an ambulance headed to Kosair Children’s Hospital in Louisville.
And then, just like that, Sarah was told “We have an opening to do surgery this morning.” Right away, she knew things were serious.
From bad to worse
Meanwhile, her son Titus, who had just turned 6, was also sick, but seemed to be handling it better. But then he got sicker and joined his sister in the hospital. He, too, developed HUS, although he didn’t need to undergo dialysis. But he did develop pancreatitis from the E. coli infection he had contracted from the contaminated raw milk, and then a staph infection.
Sarah quickly learned how serious HUS is and how painful dialysis and the treatment for pancreatitis can be.
“Watching them in pain was the absolute hardest thing I’ve ever done as a parent,” she said. “The amount of needles for blood draws, medications, transfusions is scary and the fear of each one only grew, making it harder not easier.”
At one point, the dialysis specialist actually teared up and told her he wasn’t sure how she was doing it — going back and forth from daughter to son and watching them go through the treatments and tests.
She was conflicted about the best way to handle it. She felt that if she walked out of the room, they would feel abandoned, but if she stayed, perhaps her anxiety would only make it harder for them.
“I tried both ways,” she said. “Hearing their cries outside of the room was torture for me.
“It’s hard to comprehend the number of needles involved. Four blood draws twice a day.”
Because her son had developed pancreatitis, he wasn’t allowed to eat or drink for three days.
“Mommy, do you want me to die or something,” he asked. “Please give me some ice. Mommy, do you not love me? Why can’t I eat?”
The brother and sister were put in rooms next to each other but couldn’t see or visit each other, which Sarah said was especially hard on them since they’re so close. Making things even harder for Sarah was that the children were in the hospital’s cancer ward, so she knew that many of the children there were fighting for their lives.
It was three weeks before the children were well enough to go home.
“I was in the hospital with them the entire time,” said Sarah. “I felt like a bat. It was still summer when they went in, and the stores were selling school supplies. When I came out, there were Christmas decorations in the stores.”
And while the children are doing well now and “playing with the best of them,” memories persist.
“Every little thing — a fever or when one of the kids gets sick — brings back so much fear,” she said. “I think it’s because of what happened to them.”
And it’s not over yet. A week ago, she took Jubilee and Titus in to have their blood tested. The hospital wants them to come back in December for full urinary testing and ultrasounds to check for scarring in the kidneys and pancreas in their son. Jubilee must return for testing every six months to make sure her kidneys are functioning. Her kidneys will remain more sensitive to illness, making any sickness more dangerous.
As for possible future complications, which isn’t uncommon with HUS, Sarah said it will be a matter of “monitor and see.”
Connecting the dots
Sarah and Brandon didn’t know what had made their children sick, but when two other children with HUS were admitted to the same hospital, things started clicking into place. Both of the other children were also part of the same raw milk buying club their family belonged to and both had drunk raw milk from the same dairy, MDM in Hodgenville, KY.
“I didn’t want to believe it for a long time,” said Sarah. “I kept looking for other sources. Maybe it was from spinach, or maybe from the ice the milk had been packed in. I wanted it to be something else. I didn’t want it to be because of raw milk I had fed my family.”
Another mom, Amy Nordyke, whose 18-month-son Seamus was one of the other children in the hospital being treated for HUS, shared some similar feelings in a piece she submitted to Food Safety News in 2014 shortly after the E. coli outbreak. Seamus was fortunate and had a good recovery.
The Nordyke family had been buying raw milk from the dairy for eight years.
“I didn’t want to admit that something I’d actively chosen for my family all this time could have taken my child’s life,” she said. “It was painful, but I began to see the connection and had to humble myself and start to face the truth.”
And while she had absolute faith in the dairy’s sanitary practices, she said she realized that she was relying on everything happening perfectly twice a day, 365 days a year, including things outside the farmer’s control.
She describes HUS as an “evil sickness — one that can attack so many different areas of the body and lead to horrific things like strokes and brain damage.”
Consider the source
Like Nordyke, Sarah had wanted to feed her family healthy, unprocessed foods. And like Nordyke, she had been beguiled by how some sources described raw milk. Information from the Weston A. Price Foundation describes it as “nature’s perfect food and extremely important for the developing brains and nervous systems of infants and children.”
The Centers of Disease Control and Prevention counters claims such as that with this warning: “Raw milk can carry harmful germs that can make you very sick or kill you. If you’re thinking about drinking raw milk because you believe it has health benefits, consider other options.”
Both moms now say they wished they hadn’t relied so much on sources that promoted raw milk as a healthy option — they wish they had scrutinized the information more carefully.
And they admit that the guilt that goes along with what happened to their children, based on choices they made, is something that haunts them.
“That’s been the hardest part for me,” said Sarah. “I’m just now accepting it. On one hand, I feel guilty because I made the decision to feed my family raw milk, yet as parents, you try to make the best decision for your family that you know how with the information that you have, and sometimes you get it wrong. I go back and forth between feeling so guilty and depressed over it and realizing I can’t change the past, I can only move forward. I cannot be a slave to fear of future parenting decisions because of it.”
She can’t help but express exasperation when she talks about how some people react when she tells them what happened to her children.
“My good friends who rode this out with me didn’t go back to raw milk,” she said. “But I have some acquaintances who still drink it. They stress that uncontaminated raw milk is good for you. But I don’t think in this day and age, anyone can be that sure about raw milk.”
When she says this, she’s referring to the fact that modern E. coli has evolved into an extremely virulent pathogen — in contrast to its weaker form in earlier days.
“My grandfather grew up drinking raw milk,” she said.
“It’s hard, though,” she said, referring to trying to get the word out about the potential dangers of raw milk. “Anyone drinking raw milk has a lot of views on healthy foods. They have to sort them out and separate the wrong information from the right information.”
And when people who know what happened to her children tell her it would never happen to them or that you can get E. coli from raw spinach too but no one stops buying it, she doesn’t take kindly to comments like that.
“I want to scream and say ‘you weren’t there. You have no idea what HUS can do.’ ”
Will they sue?
Having two children in the hospital for three weeks being treated for HUS and pancreatitis is, without a doubt, expensive. Sarah estimates the hospital costs alone came to more than $100,000. With insurance, their portion of that was 10 percent.
“In addition to the hospital bills, you wouldn’t believe the bills we received,” she said. “We received individual bills from ER doctors, specialist physicians, hospital pediatric physicians, surgeons, anesthesiologists, labs, and the ambulance. Just when you think you have them compiled, you get another one. It was so overwhelming. “
Fortunately, their church raised some of the money for medical expenses, which Sara said was a great help. For the rest, they used tax returns and set up payment plans.
“We’re still paying,” she said.
With all of the stress they were dealing with — figuring out insurance coverage, which involved multiple calls back and forth, for example — some of the bills went to collections.
“It was just all I could do to ignore it all for a while when we got home, just trying to get through the days without fear,” she said.
As for whether they’ll sue the farm and/or the store where they bought the milk, Sarah said this is something they’ve gone back and forth on.
“I feel bad for considering it because we chose to drink it. … I feel bad that the farmer and food club are small town, local businesses. But I always think, what if our suing stopped someone from getting HUS, what if someone died from this and our suing would have stopped the sales?”
Then, too she said, they still have medical bills and chances are their children will need funds for medical needs in the future because of the lasting impact of the HUS and pancreatitis.
“We are reconsidering this subject right now,” she said.
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