The number one question we get asked is- What happened? What caused Rafe’s liver to fail? Why, in only 18 days, did our seemingly healthy little boy need a life saving transplant? Long story short, we will never know. 

Now for the longer version. On November 30th, we noticed Rafe looking jaundice. After a checkup and bloodwork, we were immediately sent to OU Children’s Hospital where he was quickly diagnosed with Acute Liver Failure. After many tests and no conclusion, a liver biopsy was taken on December 7th. After a short look at the biopsy, it showed some dead cells but a majority of living cells and healthy tissue. The doctors thought he had a good chance of recovering but his liver enzymes were still rapidly climbing. The following day, they sent us to Cincinnati since they are a transplant hospital with more resources. I had to take the biopsy with me on the mediflight so the doctors in Cincinnati could take a closer look at it. That felt like a very top level spy mission. I checked my purse about 547 times but it was a successful mission. 

Prior to arriving to Cincinnati, Rafe had been poked and prodded more times than we could count. Dr. Campbell, in Cincinnati, said that Rafe was a perfect candidate for a PICC line. On December 10th he went into surgery that we expected to be a very simple/routine procedure. During surgery, his stats dropped very low and the doctors had a difficult time getting them back up. By the grace of God, they did. They ran many tests to establish what happened but couldn’t distingish a cause. His heart, lungs, and other organs looked normal.

That was the day he went to the ICU and didn’t leave until after transplant. After seeing the biopsy results, his doctor was furious that they made him stay in ICU for what planned to be one night of observation. She believed the stat dropped in surgery was a fluke thing and that his native liver could heal. Two days later, we were having the transplant discussion and putting him on the list. Because he declined so quickly, they put him on five days of MARS treatment which is basically a liver dialysis machine. MARS cleaned his blood enough to keep him from getting brain damage and allowed him to hang on for the next few days. (At the time, despite what the doctors told us, we thought it was going to save his liver. Looking back, we know it was only buying him time for transplant and the only thing that kept him stable.) Fast forward a few days to December 18th and Rafe had his trasplant. The surgery went perfectly and Rafe began recovery. Once the pathology report came back from his native liver, there were so few living cells that they declared no living cells. His liver was dead and the cause was inconclusive. The doctors said that his liver looked more like something that had taken years to happen but only happened in less than a months time. They had never seen a case where a liver declined so quickly and looked the way it did.

The entire process was an absolute whirlwind but nothing short of an act of God. Moment to moment, we didn’t know what to expect or what would happen. We kept faith in God’s plan and Rafe continues to heal everyday. Seeing him today, it’s hard to think that he was deathly ill just a few months ago.

It is difficult to accept that there will never be an answer to what caused this but we have to focus on the fact that Rafe is still here. We are very humbled that Rafe continues to heal and did so very quickly. Organ donation is an incredibly humbling and beautiful thing. It is something that our family will never take lightly.

Please feel free to reach out if you have questions about this or any part of the process. We want to be transparent about Rafe’s journey and will answer any questions to the best of our ability. Although it happened very quickly, there are still so many stories to tell. We will try to post more stories soon!