Her son died at 34 days old from a viral infection. Now this CT mom is seeking change.

Photo of Jordan Fenster

Ronan Delancy was born on May 21. He died 34 days later.

His mother, Katherine Delancy, wants her son’s death to mean something.

Ronan was born healthy, but 10 days later his mother noticed some strange symptoms. The newborn had a rash on his cheeks and a redness on his chest. He wasn’t as active as he had been.

His doctor thought it might be colic, but when he stopped crying, Delancy, from Hamden, became even more concerned.

“I just had a bad feeling,” she said. “He just seemed different to me. He seemed more tired. Not that he was feeling better, just that he was sick of crying or tired from crying versus feeling like something wasn’t bothering him anymore.”

Out of an abundance of caution, Delancy took the newborn back to Yale New Haven Hospital.

“In that span of 20 days, they did every possible test,” she said. “They did genetic testing, looking if it was an inborn error of metabolism. They checked him for epilepsy and certain seizure disorders. They also were looking to see if he maybe had a head injury of some sort.”

Seizures in babies, Delancy explained, don’t present like they do in older people. After he was admitted to the hospital, she watched as Ronan’s tongue flicked repeatedly toward the side of his mouth, his eyes moving erratically.

“During that entire hospitalization, we tried everything,” Delancy said. “They tried different seizure medications, and none of them were controlling the seizures, and they were getting worse.”

Eventually doctors put the baby into a medically induced coma. They did a battery of tests, on his cerebral spinal fluid, MRIs and more.

Doctors learned that the infant was suffering from a variant of human parechovirus, and though they held out hope that he would survive, Ronan Delancy died at 34 days old, in his mother’s arms.

Testing

There is a PCR test for human parechovirus, which is how Ronan’s diagnosis was ultimately determined. But its most deadly variant is thought of as a rare virus, so it’s not tested for very often. It’s not a new virus — it was first identified in 1956 — but it may be underdiagnosed.

“The typical clinical presentation includes fever, severe irritability, and rash, often leading to descriptions of ‘hot, red, angry babies,’ according to a 2018 study from researchers in New Zealand and published online by the National Institutes of Health.

Delancy’s doctor shared with her an internal newsletter sent in June after her son’s death to clinicians and infectious disease specialists at Yale New Haven Health intended to serve “as a reminder of the clinical presentations in young infants and test availability.”

“Parechovirus can cause neurologic disease in young infants, which can be severe, and may be underdiagnosed due to lack of awareness,” the newsletter said.

Human parechoviruses are not common. “A1,” the less deadly variant, most often occurs “in children less than 1 year old, and almost all children are infected by age 5,” the newsletter says, though “severe disease is rare” from that strain.

By contrast, the “A3” variant is far more virulent. It “has been reported as the leading cause of central nervous infection in children,” the newsletter says.

“It is a virus that has been more routinely recognized in the last couple years as a cause of infection in young children,” said Dr. Eric Hoppa, clinical director of the pediatric emergency Department at Connecticut Children’s Hospital.

“It’s classically not something we would have thought about or tested for,” he said.

Rick Martinello, director of infection prevention at Yale New Haven Health, said that like flu, the different strains of parechovirus come in waves.

“One year we may have one type, another year we have A3,” he said. “It does seem like there are two- to three-year cycles.”

Most of the time, Martinello said the disease is “self-limiting.” Patients will have a cold, maybe some gastrointestinal issues and then get better.

But when A3 circulates, as the Delancy family learned, it can be much worse.

“On occasion, we see severe infections in this neonatal population and as we unfortunately know it can be just devastating,” Martinello said.

Transmission

Human parechoviruses are so common that it’s difficult to tell how they spread. The Delancys have been extremely worried about spreading disease in light of the COVID pandemic.

“My family had been isolating, I had been neurotic about COVID,” she said. “I work in the hospital. I didn’t eat lunch with any of my co-workers. For the past two years I have only seen my family with masks on for short periods of time, usually outside.”

“If it happened to us, it really could happen to anybody,” she said.

Ronan had only been home for eight days before he went back to the hospital. He met his grandparents outside, while they wore masks.

It’s possible that Ronan caught the virus from his mother or father, or perhaps in the hospital.

“The only other person that he met was my daughter who’s in daycare, and that, unfortunately, is the common link that I’ve seen with the other families,” Delancy said. “They all have a child who’s under the age of three. It’s horrible. It’s horrible to know.”

“I beat myself up and say, ‘we should have kept them further apart,’” she said.

Delancy believes that severe disease caused by the virus that killed her son is more prevalent than doctors know, and she’s hoping they start testing for it more often.

“There’s a good chance it’s more prevalent, or it’s going to be more prevalent soon,” she said.

Moms compare notes

Delancy herself works in health care and after her son’s diagnosis she started doing her own research, including turning to social media.

She found an online support group of parents around the world whose children had either died from human parechovirus or had been severely impacted by it.

A lot of the mothers she’s connected to had similar stories, she said: “Went into the doctor’s office, told my baby was colicky, sent home, went to the emergency department, was nearly sent home, and then my baby stopped breathing while I was in there.”

Death from human parechoviruses is most common in children younger than 90 days, but it may also cause long-term health issues. After an outbreak in Australia, researchers found that five out of eight surviving patients developed neurodevelopmental problems. Two were diagnosed with cerebral palsy.

Delancy said moms in her Facebook support group reported similar issues with their surviving children.

“All of them left the hospital with what they thought was a healthy baby,” she said. “And then years later, they realized, oh, he’s not meeting his milestone, or she’s not meeting her milestones, oh, she needs to be on a feeding tube for life.”

“It’s not just a virus that someone has, and then it’s gone,” she said.

The babies that survived did so, Delancy said, because it was “the moms pushing, pushing, pushing, saying something’s wrong.

While she said “that speaks a lot toward a mother’s intuition and knowing your child,” Delancy also believes it suggests that there needs to be a change in policy. “It also says that some sort of standard of practice has to change where there is a PCR test for this virus.”

That, she said, is what is keeping her going. She has a two-year-old daughter who needs care and attention, but she wants more than anything for her son’s death to matter.

“The only thing that gets me out of bed in the morning is thinking that maybe I can prevent this for another family,” she said. “Because it’s horrible. “More than anything, I want my child back, and I can’t do that. But if something can change, and some other family doesn’t have to go through the same thing, then at least Ronan has made an impact.”