On March 6, 2016, we purchased baby goats. We were so excited to have these farm animals. Little did we know that baby goats are high risk for shedding Shiga toxin-producing E.coli (STEC) in their manure. As little as ten cells can cause a severe illness in children.

On March 16th, our 13-month-old son Cameron started having stomach pains and then bloody diarrhea. He was overall unwell, very fussy and had a fever. My two-year-old daughter also became ill with the same symptoms, but was doing much better than Cameron. Within a few days, she began to show signs of improvement.

On March 17th, we took Cameron to our pediatrician. He sent us home pending lab tests but thought it was just a stomach bug. Late that same night Cameron’s symptoms and pain became worse so we took him into the ER at Children’s Mercy Overland Park. After a CT scan they thought his intestines were twisted. This prompted them to admit Cameron.

On March 18th, bloodwork revealed his hemoglobin and platelets were decreasing and his BUN and creatinine levels were beginning to rise. On March 19th, he was diagnosed with Hemolytic Uremic Syndrome, HUS. He was in complete kidney failure. 5-10% of children with a STEC infection go on to develop HUS, a red blood cell disorder.

The whole process was very hard. It felt like weeks before they even knew what was really wrong, even though it had only been a few days. The reality of the seriousness did not hit me until they placed the dialysis catheter and talked about putting him on a ventilator to perform the dialysis. They didn’t end up going that route but he did spend a few days in the PICU while he stabilized. It all happened so fast but also seemed like it took weeks. We had never heard of HUS before he was sick, so had no idea what it was or how you could contract it. Later we discovered it was mostly likely from our beloved baby goats.  

On March 20th, Cameron started peritoneal dialysis. Shortly after having his Peritoneal catheter placed, he pulled on it resulting in the fluid for dialysis to start leaking. After five days, they switched him to hemodialysis as PD was not working well for Cameron. Overall, I feel we were very blessed with the number of complications Cameron had in comparison to other kids I have read about. He was diagnosed with high blood pressure shortly after his peritoneal dialysis catheter was placed and he had a PICC line placed due to having trouble with his IVS. He had to be on a special formula due to high potassium levels. He received nine blood and three platelet transfusions; the blood transfusions were especially hard on him. He was very uncomfortable during the process. Overall, he had a lot of pain and discomfort.

On April 6th, after twenty-five days in the hospital, Cameron went home. It was great to go home but it was also very scary. We had such mixed emotions. We worried that we should have stayed in the hospital longer. We had to learn a whole new normal. After the long hospitalization, Cameron had to learn how to walk again as he had only been walking for a few months before he got sick. We also had to get used to the process of taking daily meds which was brand new for us. After discharge we had to go back to the hospital three times a week to have his blood pressure checked.

Nine days after being at home, we had to return to the hospital for two days because his blood pressure was not being controlled well with his meds. He has since had two overnight hospital stays due to high blood pressure. Ever since Cameron’s long hospitalization, I have struggled with the typical childhood illnesses. Nothing feels typical. I worry any time he has a sniffle that something major is happening with him.  It triggers the fear that it will turn into something life threatening.

Today, Cameron has stage 2 chronic kidney disease and still takes blood pressure medication to protect his kidneys. He will have his kidneys monitored the rest of his life. He still struggles major anxiety when it comes to doctors or the hospital, but this anxiety does not interfere with the rest of his life.

Overall, Cameron is doing great! He is a very active 10-year-old. He is on the go constantly playing sports, fishing, going to tractor pulls, car races and Monster Jam shows.  His favorite sport is baseball where he pitches and catches. He also loves woodworking and working outside with his dad