When Ronan DeLancy was born at Yale New Haven Hospital in late May, his parents, Kat and Mitchell, couldn't have been happier.
“I took incredibly good care of myself during pregnancy,” Kat said, “He was a healthy newborn.”
Ronan was welcomed into the DeLancy’s growing family. Kat is a healthcare professional, a clinical dietician who works with diabetes patients. Mitchell is a teacher, and the two have known each other since high school in Hamden, the town where they still live.
Their first child – a daughter – was born in June of 2020, during the height of the pandemic, so the family was used to the task of shielding a newborn from any potential infection. When they brought Ronan home after an easy labor and delivery, they made sure he came in contact with no one except his sister in the early weeks of his life.
But despite their caution, just over a month later, the family is now struggling to comprehend the shocking death of their healthy baby, after a devastating viral infection.
Mystery illness
At first, Ronan gained weight and seemed to be thriving, but when he was just 11 days old, something seemed amiss. He developed a red rash on his body.
“He all of a sudden got really fussy, like very, very, very, very angry,” Kat said. “I was concerned, but my sister was like, it's okay. You know, babies get upset. That's what happens.”
She took Ronan to the pediatrician, who checked him out and reassured her, suggesting it might just be gas.
“I just still had something in my gut telling me that something was wrong,” she said. “I just feel like he's different and, you know, I felt like a crazy person saying I have a fussy baby.”
While Ronan had quieted, he still didn’t seem right to Kat. She wanted to take him to get checked again; her husband was skeptical.
“We totally had that feeling,” Mitchell said. “If we brought him to the hospital and started ringing all the alarms, and they would just say, ‘these are all normal things.’”
But Kat’s concern wouldn't go away, and at 2 a.m., she ended up in the emergency room at Yale. The triage nurse checked him over, putting an oxygen saturation monitor on his foot.
“Normally it should read a hundred and it read 70 [percent],” Kat said.
Thinking it was a misreading, the nurse moved the monitor to another toe. It read 20%. She ran with the baby back to a treatment room and within minutes a team of doctors had him intubated with a breathing tube.
“I stood there in shock,” Kat said. “Next thing I knew, I broke down in tears because I knew that whatever was happening, it was incredibly serious.”
MRIs revealed that Ronan had a swelling in areas of his brain, but the cause remained a mystery for four more days as doctors ran a series of tests. Eventually, through a spinal tap, they detected an infection called human parechovirus. His body’s reaction to the virus was causing the brain inflammation and almost continual seizures. Ronan had to be placed on stronger anti-seizure medication, and eventually was completely sedated.
There is no specific treatment for human parechovirus. Ronan was given supportive care while they waited for his body to clear the infection. But a follow-up MRI some days later revealed that areas of his brain tissue were actually missing, so devastating was the damage from the inflammation.
“That reality took a while for it to sink in for us, to really realize that he wasn't going to get better,” Kat said.
“For me, that wasn't really until the last day or the day before, that I realized we had the worst possible outcome,” Mitch said.
Ronan lived to be 34 days old and then died in his parents’ arms.
Viral cause
Human parechovirus isn't rare. In fact it's a common virus that circulates in the population — what's unusual is for anyone to get sick enough to need hospitalization. But this year looks a little different.
“I've diagnosed this literally in the last three weeks, three times,” said Dr. Ian Michelow, head of infectious disease at Connecticut Children's Hospital in Hartford. “But in the cases that I've seen, they've been very mild.”
There are no official statistics, but Michelow said he’s aware of reports of the virus being diagnosed throughout the U.S., and he said there’s no question we’re seeing an uptick in cases.
Michelow believes this may be yet another side effect of the pandemic.
“It may be that COVID is changing the dynamics of how viruses are infecting people,” he said. “Because people have been social distancing, we're not being exposed to those types of viruses. So children, in a sense, have been protected from all viruses, not just COVID. And what could be happening is that they've lost that year-to-year immunity.”
It’s also easier these days to detect a wider variety of viruses as testing technology has improved.
“We have more sophisticated technologies where we're doing PCR tests, which we didn't have just a few years ago, and so more centers are using that test to figure out what the precise causes are of these brain infections,” Michelow said.
He recommends that parents continue to be cautious, encouraging handwashing, masking in crowded situations and social distancing if anyone is sick. But managing seasonal viruses is always a balancing act.
“You want children to be exposed to some extent, to develop that strength of their body to be able to fight infection,” Michelow said. “But not too much that they get overly sick from that.”
He also said it’s impossible to predict which virus in which particular child can end up as a very severe infection, of the kind Ronan DeLancy experienced.
Outreach
For Kat DeLancy, the shocking loss of her healthy newborn son has now connected her with anxious parents around the country. Within days of his death she had posted her son’s story on Facebook, hoping to warn others of the dangers of the virus.
“I've had people reach out and thank me,” she said. “I mean, in the past few days, I've had people message me that said — ‘my baby is currently hospitalized and I heard your story and you know, I'm scared and what should I expect? And what can I do?’”
She said there are still some times in these early days of loss where she wonders how the outcome could have been different, had she not acted on her instincts that night she took Ronan to the hospital.
“He most likely would have passed away in his sleep and no one would have known what was going on,” she said. “And my heart breaks thinking about putting him through 20 days of a hospitalization that still didn't come out with a positive outcome. But if anything, maybe knowing why he passed away will prevent some other child from suffering the same outcome in the future.”
That's what she hopes can come out of their loss.
“I want my son to have a legacy,” she said. “I like hearing his name. I want people to know about Ronan. I'm going to try and gather whatever I can to find some sort of cure for this and hope that no other baby has to get sick or die from this virus.”
The DeLancys have set up a website with more information about their story and resources on parechovirus.