This Rochester mom says RSV changed her parenting

Taylor Jones’ three-month-old daughter, Aylanni, had always been a healthy and happy baby.

“No underlying health issues. There was nothing that was wrong with her,” Jones said. Until a few weeks before Thanksgiving when Aylanni came down with a cold.

Jones said it started with a fever and coughing, but she soon noticed Aylanni was having trouble breathing. Jones called an ambulance. On the way to the hospital, Aylanni’s oxygen levels began to drop, and she was placed on an oxygen machine.
Within 48 hours, Aylanni’s case developed into bacterial pneumonia. It was so severe she had to go on high flow oxygen.

Aylanni tested positive for Respiratory Syncytial Virus, or RSV. It’s a virus that usually causes mild cold-like symptoms, but it can be life threatening to older people, babies and anyone with a weakened immune system. For Aylanni and her family, it was a traumatic experience.

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Taylor Jones says her 3-month-old daughter, Aylanni, had always been a healthy and happy baby until she got RSV and began having trouble breathing.

For Aylani it developed into bacterial pneumonia and was eventually placed on high-flow oxygen.

“I’m like, oh my god, this is not happening. I cannot believe this is happening,” Jones said as she wiped away tears. “No mom wants to see their kid like that. Especially a baby.”

Jones’ had three older daughters at home that also tested positive for the virus. She said this was the first time the respiratory virus ever plagued her family.

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Aylanni was placed on high-flow oxygen after her oxygen levels dropped below 90 due to RSV.

“I have never experienced RSV,” she said. “I didn’t experience RSV until she (Aylanni) came along.” Jones said this experience was a painful wakeup call.

“It will mess you up emotionally if you’re not ready,” she said.

RSV is a seasonal virus, but this has been an especially bad season for the cold. RSV hospitalizations increased by almost six times this year, according to data by the Centers for Disease Control and Prevention, and physicians nationwide say this is the worst they’ve seen of the virus in years. RSV cases have started to decline, but the emergency department at Golisano Children’s Hospital remains busy.

“It’s definitely been a rough few months in terms of just sheer volume and acuity. The kids have been very sick,” said Dr. Jennifer Nayak, pediatric infectious disease specialist for UR Medicine. She said RSV has accounted for the majority of pediatric hospitalizations thus far, but the flu is moving in.

She said staff has spent a lot of time and effort ensuring that operations run smoothly and preventing overcrowding.

“There have been some capacity concerns, but we do try to manage capacity in ways such that care is not limited,” Nayak said. She added that RSV has always been a problem for infants, but this year she’s seen more older children being infected and admitted to the hospital.

Nayak believes that COVID-19 protocols over the past two years have prevented severe illness, but also disrupted the immunization process.

“Normally kids will have RSV infection the first year or two of life,” she said., “We’re seeing now some kids who perhaps didn’t get that kind of pre-existing immunity to the virus because they were more isolated.”

Nayak, who is also a researcher for the RSV vaccine trials, said significant progress is being made within these studies, but for now the hospital is still preparing for a rush after the holidays.

“If there’s one thing that we’ve learned is, don’t second guess the respiratory viruses,” she warned.

Jones said she learned that lesson the hard way. Aylanni spent 10 days in the hospital and was discharged just in time for the holidays. Aside from a lingering cough, Jones said Aylanni is doing well. However, she said this experience has changed her, as a parent, forever.

“I am more alert,” Jones said. “I’ve always loved my kids, but I just love them more. I’m just more thankful.”