More than a few years ago, I made a decision that I never dreamed would result in one of my children having to fight for his life. I was looking for a way to improve my children’s immune systems. I was in the process of removing as many processed foods as possible from our daily diet. I don’t really remember when I first ran across the idea of drinking raw (unpasteurized) milk. I bumped into it since I was doing a lot of reading on nutrition in those days. I read about all the benefits raw milk had to offer and that it was life-giving. I read that as long as I knew my farmers and knew that they took all the appropriate safety measures, my family would be safe from scary bacteria. So I jumped in and added it to our diet.
We really liked raw milk. We did see a boost in our immune systems. It became so important to us that we were willing to travel some distance to pick it up at one point. Eventually a food club was formed in our area, and we began picking up our milk there — it came from an exemplary, top-notch farm. We continued happily drinking our delicious, creamy unpasteurized milk for eight years or so with no problems, as far as we knew.
On Monday, Sept. 1, Seamus, our 18-month-old, began having bloody diarrhea, just a little bit at first. He’d been teething for a few days, and I wondered if it could be some crazy, weird teething symptom. It increased as the day progressed, and he began to lose his appetite. Beginning to worry, we took him to our family doctor on Tuesday morning. He thought it was probably viral but ordered a stool culture. We went home and tried to keep Seamus hydrated. On Thursday, when we should have gotten an answer from the culture, we found out there had been a lab error. No answers. We took a fresh diaper to the lab and again went home, still pushing fluids. On Friday, I voiced my concern to my sister, “He’s just not getting better, can’t keep anything down. The bloody diarrhea has changed to a kind of brown, bile-looking stuff.” She reminded me to make sure he was still having wet diapers. Her son had HUS (hemolytic uremic syndrome) three years ago, and she was understandably concerned. At the time he had become ill, he was also drinking raw milk supplied by the same dairy. We never made a connection as to what had possibly made him ill until now.
I immediately realized I hadn’t really been watching for urine over the past couple of days, so I started paying much closer attention. By Sunday morning, Sept. 7, we knew. He wasn’t peeing. We took him to our local ER, thinking we were seeing signs of severe dehydration. They ran bloodwork, didn’t like what they saw, said the words, “hemolytic uremic syndrome,” and called Kosair Children’s Hospital to come get us. I thought, “What?! You’re not serious. He just needs fluids.”
When we got to the PICU, they immediately ran bloodwork again and found that his kidneys weren’t working and his red blood cells were basically disintegrating. He was dying. I can’t even think what would have happened if we’d waited any longer. The doctor put in a femoral catheter right there in our room, and Seamus was undergoing dialysis within hours of our arrival.
Hemodialysis — it is incredible! Miraculous! I’ll never forget the sight of my child’s blood being drawn from his body, cleaned by a machine, and returned to his veins. The next days were a flurry of dialysis, blood transfusions, various medications, and lots of lab work. The nephrologist explained to us that 60-70 percent of HUS cases recover fully. Those numbers weren’t comforting to me! He also explained that there is no medication for HUS, and we couldn’t know yet what damage it would do to his little body. The PICU doctors and nurses kept him alive and supported his systems with nothing short of medical miracles. We knew that this was completely out of our hands. We waited and trusted, knowing that our Healer had provided amazingly skilled, compassionate hands to care for us in a dark time.
I don’t remember how long we’d been at the hospital when our nephrologist told us he thought Seamus had passed the critical point of HUS, maybe day seven. They were pleased to see that some of the damage HUS can bring hadn’t materialized. His kidney numbers began to improve, and his kidneys began to produce a little urine. We moved to the renal floor. Shortly thereafter, he improved to the point that the doctor took him off dialysis for a day to see what his body could do. The next morning, the doctor walked into our room and said, “No dialysis again today. Your son has turned a corner. It’s a good day!” He never had to have dialysis again.
We were thrilled, amazed, and SO grateful that Seamus had come through the worst of this terrible disease and was recovering in such a short period of time. There’s no way to know what will happen with HUS. There’s so much randomness to it. It can attack so many different areas of the body and lead to horrific things like strokes and brain damage. Some children have a fairly classic case, some experience lots of extra complications (aside from their kidneys shutting down and their blood being consumed), and a few don’t make it. It’s an evil sickness.
Shortly after arriving at the hospital, I heard that other children were being admitted for HUS at the same time. Then, through Facebook posts of concerned friends, I learned that I knew one of the families (two of their children would end up being hospitalized). They were fellow club members who also drank unpasteurized milk. Then I remembered that another friend and fellow club member had told me her little one was in the ER with bloody diarrhea a few days prior. (I’d told her what my doctor had told me — probably viral?) Now I was worried about that kiddo. What was going on here? 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. It was painful, but I began to see the connection and had to humble myself and start to face the truth. I’d recommended raw milk to several friends. What if this had been one of their little ones? In our second week, I met the family of a fourth child with HUS and found out that they also had connections to our club and that their child had also consumed some of the milk. Then I knew. We’d been fortunate for the past many years. We either hadn’t consumed contaminated milk or our current children had been able to handle it. Now, not long after our son had begun drinking milk, it appeared he’d been sickened by it. My four-year-old daughter also, but she did not develop HUS.
The health department is investigating the source of our E. coli/HUS cluster. They’ve done testing at the farm. It’s my understanding that the test results have been negative for E. coli. However, our nephrologist explained to us in the first few days that positive E. coli test results can be hard to obtain. I’d asked him why Seamus’ cultures were coming back negative, and that was his response. In effect, I don’t believe that negative test results are the end of the story, as evidenced by the fact that our son’s stool cultures never showed E. coli, but he was most definitely infected by it at some point and then was thrown into HUS. The Shiga toxin that is released from the E. coli as it is dying is what causes the HUS. Three families — four children hospitalized with HUS — connected by raw milk from the same source. That’s enough evidence to give this mom major pause.
Will I ever drink raw milk again? I might. I’m an adult. I love it, and I understand the risks. Will I ever again give it to my young children who don’t make their own nutritional choices? No! Its immune-boosting properties suddenly dim when I relive what my child has faced. Incidentally, I’ll never use a raw egg yolk in their smoothie again either, or share a bite of my medium-rare steak. I have a new perspective on foodborne illnesses. I DO NOT believe anything wrong or negligent happened in the processing of our milk. I know our farm was impeccable — no bad practices. I’ve come to realize, though, that I was relying on everything happening perfectly twice a day, 365 days a year (including things outside the farmer’s control). And that caught up to me. Raw milk is great until it is contaminated.
If you’re considering adding raw milk to your family’s diet, do ALL your research. The literature I read from the groups that advocate giving raw milk to children downplayed the risks. I wish I would have done more research outside of what pro-raw-milk drinkers believe. Don’t ignore the risks. Make sure you have both eyes open before you make your decision, especially if you are going to give it to your children.
For more education about the very real risks of consuming raw milk, please look here. There are videos like this one that tells the story of little Kylee Young. She contracted E. coli from raw milk in 2012. Her family is still facing a daily struggle from her bout with HUS.© Food Safety News