A Maryland mother and the doctor who treated her infant daughter for RSV want to raise awareness for a new treatment.
A new RSV shot for infants called Beyfortus, a monoclonal antibody treatment for the respiratory disease, is set to hit the market soon.
Doctors have said early trials and subsequent FDA approval show how effective the shot is. And now, a Maryland mother and the doctor who treated her infant daughter for RSV want to raise awareness for the treatment.
“I think for sure, 100%, it’s going to make a huge difference,” said Sarah Stuckey. “I just wish we had this last year; we were so close. Who knows how that could’ve made things different?”
‘You just feel helpless’
Stuckey’s daughter Caroline, who was just eight months old at the time she got sick in 2022, ended up with one of the worst cases of RSV in the entire region.
“She got sick, and we knew RSV was spreading. Everything I was reading was about RSV, and how bad it was — and how crowded hospitals were,” Stuckey said.
Initially, they brought Caroline to the doctor, who told them to wait things out.
“RSV is so complicated and it affects kids in different ways, so it was really just a guessing game,” Stuckey said.
But within two days, Caroline’s condition worsened rapidly.
“It happened so quickly,” Stuckey said. “They actually had to take her oxygen three times at the hospital, because … her oxygen was so low they thought it couldn’t possibly be real.”
Stuckey said she remembers her doctor making frantic calls for hours to hospitals up and down the East Coast, searching for a bed to take Caroline.
“Seeing the fear in our doctor’s eyes, knowing there’s nothing she could do … seeing my daughter incapacitated … you just feel helpless,” said Stuckey. “It’s hard to put into words just how you feel. I live 20 minutes outside the nation’s capital, and they’re telling me there’s potentially just nowhere for her to go.”
“We are so lucky we ended up in Dr. Custer’s care at UMD,” she went on. “It saved her life.”
“I remember Caroline’s case well,” said Dr. Jason Custer, Director of the Pediatric ICU at University of Maryland Children’s Medical Center. “Her lungs were very tight, and air was not moving through very well.”
Custer, who is also a professor at UMd. ‘s School of Medicine, says Caroline, who was initially accepted at Anne Arundel Medical Center, needed a bed with a more specialized ventilator.
When he received the call, he told WTOP he realized just how serious her condition was.
“We had one single bed available that we had just cleared somebody out of,” he told WTOP.
They were able to fly Caroline in on a helicopter, and almost immediately, Custer said she required intubation and ventilation for breathing. Her condition was so serious, he said she even required ECMO care for a few days — a form of life support that pumps and oxygenates blood outside the body, so that the heart and lungs can rest.
A supply and demand issue
According to Custer, Caroline’s case was just one part — albeit a significant part — of a massive RSV outbreak that occurred nationwide in 2022: an outbreak that hit the D.C. area hard.
“When Caroline came to us, we were in the midst of probably one of the most challenging respiratory viral surges in pediatrics that I had seen in my career,” he said.
“We had a number of children who did not see their typical viruses in early childhood — because of COVID,” Custer said.
He told WTOP that the pandemic, and the fact that children weren’t consistently in school, day cares and other spaces passing viruses around like they normally would be, created an “unprecedented” scenario.
“By the time we came to 2022, we had almost every child under the age of two or three who hadn’t developed the native immunity they typically would have by that age,” said Custer.
“They all got sick at the same time,” he said.
“When I walked out of the hospital in Annapolis, the hallways were literally lined with kids,” Stuckey said. “There was no room in the waiting room. There were children on all sides just waiting to be seen. I can’t even wrap my head around it. It was horrifying.”
Custer says the situation created a supply and demand issue, during which they had more patients than beds available. He says many kids stayed in emergency rooms for extended periods of time as a result.
For her part, Stuckey says her daughter’s journey was a long and agonizing one.
“She stayed there for 23 days,” she told WTOP. “For two weeks, she was unconscious.”
But gradually, Caroline got better.
“For the last week or so, it was mainly about making sure she was OK,” Custer said. “Making sure she was eating normally, continuing to breathe normally, things like that.”
“They tried so many things until they found what worked,” Stuckey said. “They did different ventilation settings, different medications. It was a long, drawn-out process. But Dr. Custer was there for us the whole way.”
“We were able to get them directly home from here after three and half weeks,” Custer said.
Now, at 18 months old, Sarah says Caroline is thriving.
“She’s beyond a normal, healthy kid,” Stuckey said. “She’s walking, she’s talking, she’s the best thing. I’m so grateful, and so happy, that she’s still here.”
According to Stuckey, they even got a glowing report from a neurologist recently; they had been concerned about possible brain damage from the lack of oxygen and heavy sedation Caroline experienced.
“All is well,” she said. “But we were so worried.”
‘This could be a big game changer for families’
Both Stuckey and Custer said Caroline’s case shows why a new medicine like Beyfortus could be so important.
“This is a novel approach,” Custer said. “It is one shot at the beginning of the season. This could be a big game changer for families.”
Sarah said she doesn’t wish her family’s journey upon anyone, and knows it could’ve ended very differently for them.
“What if I did lose her because there weren’t enough resources? It just felt so unreal,” she said.
“I think for sure, one hundred percent, it’s going to make a huge difference,” Stuckey said of Beyfortus. “If it can help people avoid going down the road my family had to, I would give anything to have it. God forbid any other kids get as sick as Caroline did.”
“What if we had had this medicine at this time last year? How different things have been?” she said.
Custer said he’s more optimistic about RSV season this year, because of greater immunity from last year’s outbreak. He said he hopes there’s enough herd immunity to keep numbers way down this fall and winter.
Custer expects the Beyfortus shot to be available in the near future. Now that it has been approved by the FDA, the medical community just needs an official recommendation to come down, and the shot will be more widely circulated after that.
“Hopefully it will be widely adopted and become a standard for our youngest and most vulnerable patients,” Custer said. “And take care of one of the most significant reasons for hospitalization among that group.”
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