Today would have been your 18th birthday. Sadly, in 2019 you passed away before your 11th birthday. What could have been? Would you have marched in BOA Iowa yesterday? Would you be attending homecoming? or playing football? I imagine all of this would be a sacrifice if you could live another day, hug your mom, tease your brothers, or ask me some philosophical question that I hadn’t thought of before. Happy Birthday Caleb! We miss you!

In the late winter and early spring of 2019 Caleb was having abdominal pain. This was a recurring pain, that he had suffered from every year since his 5th birthday. I wasn’t in Caleb’s life until his 8th birthday, as his mother and I had not met yet. At that time, Caleb reported that the pain was worse than he ever experienced.

My wife took him to the emergency room twice in Iowa City. On both occasions they called it gas or indigestion. Labs showed nothing wrong. I had seen the abdominal pain before, but I passed it off as growing pains or muscle spasms after his athletic excursions. This time it seemed different. He couldn’t go to school. He didn’t want to eat. I finally asked my wife for permission to look at his MyChart medical records through the University of Iowa hospitals. Just to see if I could find something that was missed.

That was when I saw a pattern. Every year since his 5th birthday there was abdominal pain, alongside a yearly growth spurt starting just before spring. Every time it was passed off as a digestive issue. Nothing in my experience with any digestive issues created this high level of pain for so long. He did not have Crohn’s disease, gluten intolerance, food poisoning, appendicitis, or constipation. He would turn a ghostly white when he had a pain episode. Curling in a ball did not provide relief, nor did lying down. The pain was on his left upper quadrant of his abdomen.

On the third trip to the emergency room I went along. The ER staff was not pleased with his return. The physician refused to see him. Instead he sent a physician assistant. They went through the same routine as before, and the PA said they were going to send him home. I said, “No, you are not.” The PA looked confused, as he was not used to being challenged. Over the next few minutes I elaborated on my discoveries on his MyChart documentation. I told him Caleb had every test, but an MRI with contrast dye for his abdomen. I told him, “We are not leaving until you wake up the gastroenterology team. The evidence is in the MyChart system if you read it.”

Forty minutes later the PA came back to us, and reported that the ER doctor had read the chart, saw the same pattern I did, and woke up the GI team. He also prescribed a Vitamin K shot for Caleb. We left, knowing we were going to get a phone call the next morning.

Within twelve hours of arriving home the phone call came, and a day later we were in the Stead Family Children’s Hospital in Iowa City. Shortly after Caleb received his MRI with contrast dye scan. The head of the department reported a day later that Caleb had Budd-Chiari Syndrome. This is an extremely rare liver disease, where blood clots in the veins of the liver, preventing the liver from filtering the blood. The physician had never seen this disease in a child, and it was the third case that he had ever seen. Caleb had a better chance of winning the lottery than getting the disease… Then we asked the question, what now? He said he needed to confer with colleagues for the best course of action.

While we researched Budd-Chiari Syndrome and treatment the doctor returned a day later with a recommendation that Caleb would be referred to the Lurie Children’s Hospital of Chicago. They were the closest children’s hospital equipped with physicians who had seen this diagnosis in children, and had provided treatment. The second choice would be the Pittsburgh Children’s Hospital. A day later while we were waiting at home for the transfer of records and appointments we learned our insurance company had denied our transfer to Lurie Children’s Hospital. United Healthcare dictated Caleb’s provider. It went against the University of Iowa’s recommendation. United Healthcare sent us to the University of Nebraska Hospital in Omaha, Nebraska instead… A move that we will always question ethically, morally, and angrily.

It was here we learned that they would do a “TIPS” procedure where they would attempt to clear the hepatic vein clots that were causing the issues within Caleb’s liver. On April 17th we returned to the hospital for a routine procedure, but it was anything but routine. The surgical team punched trough a vein and caused severe hemorrhaging. 37 units of blood product later, Caleb was kept unconscious with his incision still open while they awaited a liver for transplantation in the children’s ICU unit. They just needed Caleb to show signs of improvement. Three surgeries ensued over the next 48 hours to stop bleeding and prepare for a liver.

Sadly, Caleb kept bleeding from the trauma of the failed “TIPS” procedure. Despite being offered a liver his stats never improved and on the 20th of April Caleb succumbed to the trauma. It was the day before Easter. All of us were in a state of shock, and on our return home to Iowa, the silence within the car haunted us.

Caleb wanted his body to be donated to science. He was afraid of earthworms, so burial was never going to be an option. His ashes were returned to us about a year later. We were left with the following questions. Why did United Healthcare move us, beyond economics? Had the physician team at Nebraska ever performed this procedure on a child? Was there malpractice? What if we forced an autopsy and coroner’s inquest (Going against Caleb’s wishes?) As the years went by, what would Caleb be like now with a new liver?

I feel our children would be far better now if Caleb had survived. The trauma of Caleb’s death has scarred them all in different ways. Imagine being 10, 11, and 12 when this happened to them. My adult step-daughter was able to process the loss much differently. Caleb’s death haunts all of his family. There is a failure component that never goes away that the parenting handbook doesn’t address…

Instead what we have is a boy that will be forever ten years old. He missed out on prom, girlfriends, sports competition, writing and art classes, music classes, driving a car, marriage, a career, raising a family… We are left pondering a potential future with infinite possibilities all taken away by a decision an insurance company made… What if, they let us go to Laurie or Pittsburgh? What if we had Medicare for all? <—We need this. I dissent with United Health Care… forever…

We have a limestone memorial bench placed in his honor at the Old Stone Church near Wildcat Den State Park in rural Muscatine County, IA. It is a truly spectacular place. Caleb’s remains sit in an urn within our home. That way he never has to be near the earthworms. Today, October 4th, 2026 would have been his 18th birthday.

…and there is no “so it goes” for Caleb…