Kat Delancy’s son Ronan was almost two weeks old when she thought he was in a bit of a bad way.
“So I noticed something was wrong on Thursday, it was June 2, and he was just really upset and crying a lot,” Delancy said.
She noticed he had a red chest that didn’t look like a rash and no fever, but he cried for two or three hours.
After consulting the pediatrician over the phone, she brought him in the next day and his crying and blushing were not as bad as the day before.
“But my biggest concern was also that he seemed to be a bit grumpy. Like his breathing seemed different,” Delancy said.
He underwent a full exam and the doctors suggested he had gas or was starting to have colic. She took him home and had the unpleasant feeling that something was different. She noticed that he seemed to need a lot of energy to eat, and later that night he stopped eating altogether.
“And then I was like, ‘Okay, now something’s weird’ and he wasn’t crying. It just seemed like he was too tired to cry at that point,” Delancy said.
She went to the emergency room where they found her oxygen was low. Soon after, he started having seizures constantly. She described these seizures in a two-week-old child as rapidly moving eyes and a slight sticking out of the tongue.
“At that point they kept doing tests to try to figure out what it was, and all the viral markers came back negative. So they were like, ‘Well, we don’t think he has a virus because everything we tested came back negative,’ Delancy said.
But then a test for another virus that’s not high on the list because it’s so rare.
“And then they finally found parechovirus in his system, after doing several tests and doing a lumbar puncture, they found it in his cerebrospinal fluid,” Delancy said.
She was hopeful when the medical team was able to identify a cause of Ronan’s illness.
Parechovirus is one of many viruses in the picornavirus family. These viruses also include rhinovirus, enterovirus and the most serious is poliomyelitis virus.
Dr Andrew Wong of Hartford Healthcare said children are not often tested for viruses.
“Because we assume the child will get better,” Wong said. “But I think the message here is that we should start checking them as a first-line test because potentially there are serious consequences, sometimes lifelong effects, or long-term effects of this virus, this which is different from how we’ve always viewed them.
Ronan spent 20 days in hospital battling parechovirus and the effects of extensive brain damage from constant seizures. He died at 34 days.
“And I was like, ‘how did my kid get this then?’ Especially since no one in our household was sick or had any outward symptoms of anything, and had virtually no exposure otherwise,” Delancy said.
Ronan is her second pandemic baby and she said she followed many health precautions.
The CDC recently issued warnings about an increasing number of parechovirus cases in the United States. Symptoms include upper respiratory tract infections, fevers and rashes in children six months to five years old. It can also cause serious illness in infants under three months, including sepsis, seizures and meningitis.
“I would really like it to be a quick test, ultimately, like a test that can be done right at the pediatrician’s office or in an urgent care department,” Wong said. “That way they will know that the baby should be kept at home in quarantine, so that it does not spread. But also, they can be aware and intervene earlier if the baby gets sicker.
The CDC has also sounded the alarm to clinicians, urging them to consider testing and diagnosing parechovirus in infants with virus-like symptoms with no other known cause.
Delancy said she was also on a mission to spread the word.
“So, you know, if it could happen to us, it really can happen to anyone,” Delancy said. “And that’s the really terrifying part about it. That’s why I say to myself, I want people to know, and I want pediatricians and I want hospitals to know.