April is a month of loss in my family. I’ve lost grandparents, dogs, and a stepson all in the month of April. Each death hurt obviously, but one hurt and still hurts more than most. Yesterday marked the six years since my stepson passed away at the age of ten from a rare liver disorder called Budd Chiari Syndrome.

Budd Chiari Syndrome is a disease where the blood in the hepatic veins clot them shut. This creates a buildup or a back up of fluid within the liver causing it to swell up. It also affects the gall bladder and spleen to some extent as the bodies internal plumbing doesn’t function correctly. Left untreated the liver eventually fails, jaundice becomes noticeable and the victim of the disease eventually dies in the poisons the liver can’t filter out. Caleb’s body had grown all kinds of new veins in an attempt to compensate all around the liver, but his body couldn’t adapt.

Budd Chiari syndrome is incredibly rare. Most Budd Chiari patients are young adults between 35-40 years of age. The statistics are split equally between men and women with about 1 in 1,000,000 being diagnosed. Cases developing in children are even rarer. Our physician at the University of Iowa said our odds of winning the lottery were better than having a child come down with Budd Chiari. (1 in 1,000,000,000ish)

Treatment for Budd Chiari starts conservatively with anti-coagulants, Vitamin K treatments, and then surgery. The first surgery is called a “TiPS” procedure. This is a catheter that is inserted through the vein of the thigh and inserted into the hepatic veins to unclog the plumbing. It is a routine surgery, much like a coronary artery stint procedure. However, the only 100% cure for the disease is a liver transplant.

My stepson Caleb lost his battle with the disease within weeks of the diagnosis. Nothing went right for him from the beginning to end. On April 19, 2019 he succumbed. Easter weekend of all times. We drove home in the darkness that Saturday from Omaha, Nebraska back to Southeast Iowa. We were numb, exhausted, and dejected. Then there was anger. The trauma of the loss affected us in odd ways. I personally walked in a fog that spring. I don’t remember what my bands played on their spring concert. We struggled…

Getting to a diagnosis was difficult. In the brief time (about two and half years) that my wife and I dated, moved in together, and married Caleb had a couple of episodes where he had severe abdominal pain and discomfort in the spring and early summers. I passed it off as nothing, kids overacting about gas… whatever. Doctors also passed it off as routine. Then in the late winter of 2019. The winter of the great freeze he spiraled downhill with bouts of pain where he could not sleep, eat, or do anything. He went to the E.R. in Iowa City twice only to be dismissed as having gas… I asked my wife for access to the My Chart system to read through Caleb’s medical records. I saw a pattern from around age five every spring and summer when he had an episode of really bad gas, constipation, and within a couple days he was fine. I mentioned this to my wife and she agreed with my patterned analysis. This happened around a growth spurt annually.

That very evening we went back to the E.R. for the third time. They gave us the runaround. I heard the E.R. doctor tell his PA to send us home. I told my wife, “I’m prepared to be arrested.” She said, “Don’t be rash.” I told the PA what I had found in his medical records. I told them I may be a music teacher, but I can recognize a pattern of behavior that makes me want answers. I said, we are not leaving until the ER doctor reads the chart, and wakes up the G.I. team. He has had every test, but an MRI with contrast dye. Let’s stop messing around and get some answers.

The doctor at the ER listened to the PA and I, and he read the chart. He saw what I saw. He woke up the head of the GI team, and they said they would review the files in the morning at their meeting… …missioned accomplished, we went home. The next day we received a phone call to come to the Stead Family Children’s Hospital. A bed was waiting and the test was ordered. 36 hours after that ER stint in the early hours of the morning Caleb had his MRI with Contrast dye. The GI doctor informed us a day later that Caleb had Budd Chiari. It was the first child case they had ever seen and only the third in the doctor’s residency at Iowa.

Over the next couple of days Iowa reached out to Lurie Children’s Hospital at Northwestern University and the Pittsburgh Children’s Hospital. These hospitals had the most experience working with children with Budd Chiari. Unfortunately our insurance, United Healthcare, told everyone that neither were acceptable to them. Profit over patient reared its head. United Healthcare sent us to Nebraska. Within a week we were on our way to Omaha trip one. We met, they gave us a treatment plan and got Caleb scheduled for the TiPS procedure. This was a routine they said. In and out, two days tops….

Second trip to Nebraska, we check in for the routine… …The TiPS procedure failed. Caleb’s hepatic vein was punctured during the procedure. They had to open him and search for the leak. He went through 20 units of blood product before they stopped the bleeding, but this started a cascade of disaster as more problems began to appear. Shock, kidney failure, six more surgeries to remove gall bladder, spleen, liver, and stopping leaking vessels. He was placed on transplant list and a liver was offered, but he had to meet certain criteria in hours… but… his heart stopped… he was brought back… his ammonia levels went up… his eyes started to bulge… there was fear of brain damage… and just a couple hours later he was pronounced dead…

There lay our little athlete. Our musician and artist. Our little author…silenced forever… Just two months earlier he watched his New England Patriots win the Super Bowl. Just a few months before that he did a wax museum project on Roberto Clemente. He received cards and gifts from both the Pittsburgh Pirates and New England Patriots during his illness. He was even placed on the make a wish list. All of this was for naught as he was gone.

No prayers, no God, just deficiency in all things associated with the American medical system. Was it malpractice or just an accident. We didn’t ask, but we had an attorney take a look. There was not enough evidence to suggest malpractice. Caleb made us aware that he wanted to donate his body to science in the event of his death. He did not want to be buried as he was afraid of bugs and worms. The University of Nebraska accepted his ultimate gift. We placed a memorial bench for him at the Old Stone Church near Muscatine, IA. http://www.oldstonechurch.us

After a year we received his cremains and he was placed in an urn that sits in our home in his rightful place. Easter ceases to have any meaning for us. As does anything religious. All of that faith practice is simply supernatural gumbo for me personally. When you have watched as much death as I have and watched all the thoughts and prayers fail time and time again it doesn’t take long to see that the statistics are clear. Humanity fails its own by not practicing science. It fails its own by embracing profit over potential. Our 10 year old boy deserved better. As do the millions of people worldwide that die because capitalism means more than the people.

On this 20th of April, 2025 as I wait for $47 to declare his emergency or whatever dumbassery he has in store for us next. I will fight to my dying day to regulate their capitalism, deliver medicare for all, tax the rich, and defeat the cultish actions of Christian Nationalism. My dissent is fueled by this loss. I’ve seen far too many failures of the current American system. No, this violence is not from democrats. This passive neglectful violence and loss is fueled by neoliberal capitalism sponsored by Mike Johnson, MJT, Space Pirate, $47, the Bad Catholic, and countless other greedy bastards in charge of public policy. This is the violence they perpetrate on the American people. Capitalism is their weapon of mass destruction. Say their names… every victim of their crusade… for me that is Caleb… Say their names… dissent openly… make them own their greed, selfishness, and feckless behavior… April 19th six years ago… was an awakening… In honor of our Caleb… I dissent… so it goes…