The parents say by not publicly acknowledging the two deaths, the agency is usually intentionally downplaying the severity of acute flaccid myelitis (AFM), a disease which paralyzes healthy children in a matter of hours.
“I feel like they’re just sugar-coating This particular,” said Katie Bustamante, whose son Alex, age 6, died in May. “the item eliminates my trust within the CDC.”
A CDC official said while she couldn’t comment directly on the boys’ cases, there may be a “lag” in AFM reporting by physicians to health departments to the CDC.
“I think we want to catch up with the backlog,” said Dr. Anne Schuchat, principal deputy director of the CDC, a 30-year veteran of the CDC as well as also a retired rear admiral within the US Public Health Service. “Even the past week we’ve expanded the number of disease detectives on the program.”
Schuchat, who twice served as acting director of the agency as well as also helped lead the fight against pandemic flu, SARS as well as also anthrax, said she was sorry to hear which the parents think the CDC is usually hiding something.
“I certainly want to make sure the information which we have is usually shared as quickly as possible,” Schuchat said. “We wish we understood all which we need to about This particular disease as well as also how to best diagnose the item, how to treat the item as well as also how to give families enough information about what to expect. I think the item’s very challenging when your child has been through something quite traumatic to not even know what the prognosis is usually.”
She added which there’s no simple lab test for AFM, so CDC disease detectives have to carefully review medical records.
Chris as well as also Robin Roberts lost their 5-year old son, Carter, in September after a 2-year battle with AFM. CNN has seen portions of Carter’s as well as also Alex’s medical records, which show their doctors had diagnosed them with AFM. In Carter’s case, doctors at three medical centers — Virginia Commonwealth University, Johns Hopkins as well as also Boston Children’s Hospital — diagnosed him with the disease.
The CDC has set up a system where physicians report cases of AFM to their state health departments, which in turn report the cases to the CDC.
Two pediatric neurologists who serve as medical advisers to the CDC on AFM say they think the agency could be faster in reviewing as well as also reporting cases as well as also deaths.
“the item shouldn’t be taking This particular long to confirm these cases,” said Dr. Keith Van Haren, assistant professor of neurology at the Stanford University School of Medicine as well as also one of the CDC advisers. which kind of a turn around time for mortality reviews is usually a symptom of a disconnect at the CDC.”
Carter’s parents agree.
“They’re doing a s*** job of measuring This particular, excuse my French,” said his mother, Robin, a healthcare the item specialist.
‘Mommy, mommy, help me’
On July 29, 2016, Carter vomited after dinner. The next day he had a fever of 99 degrees however was feeling well enough to eat as well as also drink.
the item’s just a virus, thought his parents, who have two older children. the item was nothing alarming.
The next morning, Robin went into her son’s room as well as also found him on the floor.
“Mommy, mommy, help me,” his mother remembers him saying.
Robin remembers trying to help Carter stand up. His head flopped back. He couldn’t use his right arm. She scooped up her son as well as also took him to the emergency room.
Within a few days, Carter couldn’t move anything below his neck. He was put on a ventilator as well as also never came off.
For the next two years, his family as well as also nurses did everything for him. They fed him. They scratched his nose when he had an itch. All day as well as also all night they turned him every 0 minutes so he wouldn’t get bedsores.
Carter was undeterred by his illness. He could read books by the time he was four. He instructed his father on how to construct characters out of Legos as well as also medieval swords out of aluminum foil.
Carter went to pre-school, as well as also in August of This particular year started off kindergarten. He came home by his first day beaming about circle time as well as also a pretty little girl in his class who wore a rainbow dress.
A few weeks later, on September 22, he was having trouble breathing. Robin was home alone with him as well as also called an ambulance. His last words to her were: “Mommy, I’m fine.”
Today, Carter’s ashes sit in an urn in his family’s living room.
A doctor wants answers
Both Carter’s parents as well as also Alex’s parents say they’re not sure if the CDC ever accepted their sons as official AFM cases back when they got sick in 2016.
Alex’s mother says his doctor told her he reported his death to the California Department of Public Health, however she doesn’t know what happened after which.
In Carter’s case, his neurologist Dr. Sanjai Rao, told CNN he filled out paperwork on the CDC’s website as well as also following the CDC’s instructions, sent the paperwork, lab specimens as well as also MRI findings to the Virginia Department of Health.
An epidemiologist there confirmed Carter’s information was sent along to the CDC, according to Rao, assistant professor of pediatric neurology at Children’s Hospital of Richmond at Virginia Commonwealth University.
Doctors as well as also parents say part of their frustration is usually which when they’ve asked the CDC about cases as well as also deaths, they haven’t received responses.
Rao says he reached out to a scientist on the CDC’s AFM team, however never heard back.
“I could like answers,” said Rao, an assistant professor of pediatric neurology at Children’s Hospital of Richmond at Virginia Commonwealth University.
His voice chokes with emotion as he talks about Carter, whom he cared for for more than two years. “I want to know which the process benefits future cases of children with AFM,” he said.
various other experts agree with Rao. “We want accurate numbers,” said Dr. Kenneth Tyler, professor as well as also chair of the department of neurology at the University of Colorado School of Medicine, as well as also an adviser to the CDC on AFM.
An accurate count could help answer questions, he said. Where are the cases? How old are the patients? Are they male or female? “which helps us understand causation,” he said.
“The CDC is usually within the place of trying to understand the long-term [consequences], as well as also a death is usually actually important,” added Van Haren, the pediatric neurologist at Stanford as well as also adviser to the CDC.
Schuchat said the CDC is usually working hard on AFM. “We are working 24-7 on This particular as well as also actually take This particular seriously,” she said.
She said the agency has established a case definition for AFM, done laboratory testing on samples sent to them by state health departments, as well as also worked with outside experts to publish information in medical journals.
A CDC spokeswoman said within the past two weeks, the agency has added 14 officers by the Epidemiologic Intelligence Services — known as “disease detectives” — to help review AFM reports filed by state health departments.
An enterprising parent
On June 10, 2017, about ten months after Carter got sick, Robin reached out to the CDC.
She was angry.
“I know the item may seem menial, a request by a clinically educated mother, however you are doing these children as well as also family a disservice to not further educate physicians or demand surveillance similar to which of Zika,” she wrote to an email address she found on the CDC’s website.
“Please do what is usually right by public health standards as well as also gather more data,” she continued. “Or, god forbid if you know more than what you say in a limited fashion online please share the item with the public as well as also these patients. My son was immunized on schedule we observed very not bad hygiene precautions as well as also still became a vent dependent quadriplegic overnight.”
She received a response two days later.
“We are sorry to hear about your son,” the item said. “Your comments have been forwarded to the appropriate CDC program for their information. They will contact you directly if they have any questions.”
She never heard by the CDC again.
CNN relayed Robin’s story to the CDC.
“I’m so sorry to hear which. which’s very concerning,” Schuchat told CNN. “We are trying to better connect with families, as well as also the item’s so important which we listen to them.”
Messonnier, the CDC doctor, told CNN last month which she’d never heard of the Facebook group.
Last week another enterprising parent got a response by the federal agency. Four-year-old Joey Wilcox of Herndon, Virginia, was diagnosed with AFM in September. His father, Jeremy, works with government agencies as part of his job at a high-tech consulting firm. Wilcox knows how to seek out — as well as also find — officials.
He aimed high. Online he found Schuchat’s email address, as well as also asked her to meet with him as well as also various other parents. He says she responded within 15 minutes.
He thinks one of the reasons for the quick response is usually the “F” which parents gave the CDC.
which was a pivotal moment,” he said of the CNN story.
More than a dozen families are scheduled to meet with Schuchat Tuesday in Washington.
Carter Roberts’ as well as also Alex Bustamante’s parents will be among them.