A North Texas mother is sharing her family’s experience with a severe case of pediatric hepatitis in hopes of raising awareness.
Samantha Perez-Reyes of Little Elm said in January, her son Kaiden was admitted to the hospital.
“He had some tea-like urine earlier that week. He was also having a little bit of diarrhea, but his teething symptoms are typically diarrhea. So, we really didn’t think anything of it,” Perez-Reyes recalled. “Then I noticed the night before we took him to urgent care, his skin kind of looked a little bit of a yellow tint. I thought it was just our lighting. Then my husband was with him when I was at work and his eyes started turning yellow.”
When she and her husband arrived, Perez-Reyes said doctors told them Kaiden was going into liver failure “for absolutely no reason.”
“They didn’t know what was happening. They said his liver was swollen. Their term for that is hepatitis,” she said. “They told us, there’s a good chance we’ll never know [why]. They weren’t able to tell by examining his liver.”
Kaiden, who was 17 months at the time, stayed in the hospital for 35 days. He eventually underwent a liver transplant on February 13.
“It was nerve-wracking and of course, every surgery there’s things that could happen and go wrong. We were just praying and hoping that everything would be okay,” Perez-Reyes said. “At that point, he needed it. I mean, he was so lethargic in the hospital. He had so much fluid in his stomach. He couldn’t walk. He couldn’t sit. They had him on dialysis.”
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As of May 18, at least 36 states and territories in the U.S. have reported 180 cases of pediatric patients under investigation for hepatitis of unknown cause. According to the CDC, 109 cases were publicly reported on May 5. It is investigating cases and conducting laboratory tests to examine possible causes.
In Tarrant County, public health officials announced its first case of pediatric hepatitis of “unknown origin”. The patient is a resident of Tarrant County and was hospitalized at a facility in another county. The hepatitis resolved and the child was discharged, according to a press release from Tarrant County Public Health.
Dr. Marcial Oquendo, a pediatrician based in Frisco, said hepatitis is characterized by the inflammation of the liver. There are many reasons it can get swollen or become inflamed, Dr. Oquendo said.
“The mysterious part is why we’re seeing this level of infection of the liver when normally, we wouldn’t,” Dr. Oquendo said Friday.
Severe hepatitis in children remains rare, Oquendo. However, he noted parents and caregivers should remain aware of hepatitis symptoms such as jaundice, which is yellowing of the skin and eyes.
“[If] they have itches all over the body, if they have white stool like when they poop, feces are milky-colored, chalky colored, that’s a good reason to talk to your doctor,” he explained.
For Perez-Reyes’ family, a new liver for her son also means a new way of living. Kaiden’s medication list is currently more than a dozen medications long, though his mother said they hope it will eventually only contain one or two.
“He’s going to be on medication for the rest of his life. Can’t go in public. Can’t play with other kids. Can’t have certain people around,” she said. “It took him a little bit to learn to crawl and walk and a lot of frustration. He’s still not there with his vocabulary.”
The family is currently working with the Children’s Organ Transplant Association to assist with finances related to his transplant journey. For more information, click here.