Within hours of being born, Henry Dotson got fussy and refused to eat — a warning sign that led doctors to a terrifying diagnosis. Now, at one year old, the Miami toddler is recovering from a liver transplant and learning to crawl, after a rare genetic condition threatened to poison his blood with ammonia.
Henry was diagnosed with Ornithine Transcarbamylase deficiency, or OTC deficiency, following treatment in the neonatal intensive care unit, according to WSVN. The condition affects how the body processes protein and turns it into toxic ammonia instead of safely removing it, since people with OTC deficiency lack a liver enzyme needed to clear ammonia from the blood, per the same report. Left unchecked, that buildup can be dangerous: the Cleveland Clinic notes that ammonia accumulating in the blood can damage the brain.
Doctors immediately put Henry on dialysis and a strict diet to keep his ammonia levels in check, the station reported. His mother, Amanda Dotson, later learned she was the source of his illness. “I found out when he got diagnosed that I was also a carrier of OTC and that's how he got it,” she said, according to the outlet's report. OTC deficiency is an inherited, X-linked condition — male children who inherit the gene change develop the disease, while female children typically become carriers, per Cleveland Clinic, which adds that between 10% and 20% of female carriers eventually develop symptoms themselves. Women with OTC deficiency often have only mild symptoms, the station noted, which may explain why Amanda had not known she carried the condition.
A Race to Miami for a Spot on the Transplant List
With no way to reverse Henry's condition through diet and dialysis alone, the Dotson family traveled to Miami hoping to get him on the liver transplant list, the station reported. Testing confirmed Henry was a good candidate for a new liver — but he was not a candidate for gene therapy, one of only two treatments described in the report as potential cures for OTC deficiency. That characterization differs from Cleveland Clinic's own description of the disease, which states that a liver transplant is the only way to cure OTC deficiency, while separately noting that gene therapy trials are ongoing and could one day offer a non-transplant option.
Henry spent two months on the transplant list before the family's early-morning phone call came through. “We got the call at 6 a.m.,” Amanda said, describing the moment they learned a donor liver was available, per the report. Amanda has also described the fear that came with Henry's illness, saying she worried the family would not get past it.
Henry then underwent liver transplant surgery, receiving the donor organ he needed. Stefany Hernandez, who heads the pediatric liver transplant program at the Miami Transplant Institute, said the team was able to give Henry exactly what he needed. “We were able to get him what he truly needed, a liver,” Hernandez said, according to WSVN. The Miami Transplant Institute says it provides many types of transplants that are quite rare, per the same report.
Recovery, With Help From the Ronald McDonald House
Henry's surgery was successful, and the Ronald McDonald House housed Henry and his family for free during his recovery, WSVN reported. A year after his rocky start, the toddler is now learning to crawl — a milestone that stands out given how much he has already endured in his short life, the station noted.
Henry's case echoes other pediatric OTC stories around the country. At Duke University, a four-month-old named Noah Mann had already endured three hospital admissions for hyperammonemia before his family sought a transplant evaluation, according to Duke Health. Duke physicians have said that transplantation before six months of age is vital for the best outcomes in children with the disorder, and performed that particular transplant using a partial liver from a deceased donor — a procedure only about 10% of U.S. transplant programs are equipped to perform. In Noah's case, Duke Health reported he was placed on the national organ waitlist at two months old and received a matched liver two months after his evaluation there.
Research into the broader urea-cycle disorder family that includes OTC deficiency underscores how serious — and how common within that category — the condition can be. A study at La Paz University Hospital covering patients diagnosed between 2000 and 2021 found that 20 of 33 pediatric urea-cycle-disorder cases involved OTC deficiency specifically, according to Frontiers in Pediatrics. The same research notes that acute hyperammonemia often requires emergency treatment, including protein restriction, ammonia-lowering drugs and sometimes extracorporeal detoxification — the kind of intensive, round-the-clock care that defined Henry's earliest days. For now, his family can focus on something simpler: watching him crawl.
