MIAMI (WSVN) - It’s the story of a sick newborn brought to a neonatal intensive care unit. Courtney Allen shares his story and his mother’s mission to let other parents know about a rare and life-threatening hereditary condition.
Henry Dotson has a way of lighting up a room. He’s the center of mom Amanda and dad Ryan Dotson’s universe.
But this happy, adorable 1-year-old has been through more in his short life than most people can imagine.
Amanda: “There were days that I thought that we were never gonna get past it.”
Within hours of being born, Henry got fussy and refused to eat. That’s when a nurse took his temperature and made a startling discovery.
Amanda: “He was cold. He was hypothermic.”
Henry was rushed to the Neonatal ICU, where doctors determined Henry had a rare and dangerous condition called Ornithine Transcarbamoylase (OTC) deficiency.
Amanda: “It affects the way his body processes protein, so it turns into toxic ammonia.”
People with OTC deficiency lack a liver enzyme that rids the body of ammonia. Henry was immediately put on dialysis and given a strict diet to keep his ammonia levels in check.
Amanda: “I found out when he got diagnosed that I was also a carrier of OTC and that’s how he got it.”
Women with OTC deficiency often have mild symptoms. Some, like Amanda, aren’t diagnosed until they give birth to a male child who becomes critically ill.
Amanda: “I had no idea that I had it.”
There are only two cures for OTC deficiency—gene therapy, which Henry wasn’t a candidate for, or a liver transplant. The family traveled to Miami to see if they could get Henry on the transplant list.
Dr. Stefany Hernandez: “It’s truly quite revolutionary of a program because we provide many types of transplants that are quite rare.”
Doctor Stefany Hernandez heads the pediatric liver transplant program at the Miami Transplant Institute. She says testing confirmed Henry was a good candidate for a new liver.
And after two months on the list…
Amanda: “We got the call at 6 a.m. It came to my husband’s phone. He just looked at me, and he was like, ‘They have a liver. We need to go.'”
Henry was rushed into surgery.
Dr. Stefany Hernandez: “We were able to get him what he truly needed, a liver.”
After a successful surgery, the Ronald McDonald House housed Henry and his family for free as he recovered.
Amanda: “We haven’t had to worry about a hotel. We haven’t had to worry about meals. We haven’t had to worry about travel.”
And the family was recently able to reunite with Henry’s surgical team.
Henry is still working on milestones like learning to crawl, but with the biggest hurdle out of the way, Amanda says she’s looking forward to baby steps.
Amanda: “I am going to look back, and I’m going to say, ‘Wow, I cannot believe that we went through that.’ I want to just relax and be able to be his mom.”
A mom who can watch her little boy thrive after a life-changing gift.
Courtney Allen, 7News.
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