A year and a half ago, we first reported on a baffling, new illness responsible for nightmarish scenarios: a child wakes up and his legs don’t move. Soon, he’s paralyzed from the neck down. Since then, the number of cases has grown, yet the Centers for Disease Control says it still has no clue what’s causing it and won’t say much else. One thing we know. The disease mimics one of the world’s most feared illnesses: polio. We continue our investigation into the mysterious outbreak, that’s left hundreds of American children suddenly frozen.
Sharyl: Christopher Roberts: Carter probably developed the flu like symptoms on a Saturday morning and then within 24 hours of that, by then Sunday morning, we found him on the floor and no mobility in his right side. He was unable to move and he was faintly asking for help.
Carter Roberts was just three when he was hit by sudden paralysis that looked just like polio. We first caught up with his father Chris last year at Kennedy Krieger Institute in Baltimore, Maryland, where Carter was hospitalized for months.
Roberts: Last night, he cried for about twenty-five minutes just uncontrollably. He's in, I think, regular and constant pain. Although he is immobile, he can definitely feel everything all over his body.
As cases piled up in fall of 2014, CDC gave the mysterious paralysis a new name: Acute Flaccid Myelitis or AFM, inflammation of the spinal cord.
Mandy Baker was an honor student about to start her sophomore year of high school and went from feeling fine to being paralyzed in a single day. Her illness ran up a $3 million hospital bill for treatments not covered by insurance.
But what was causing the sudden paralysis? Doctors theorized it could be a rare polio-like virus that had also suddenly emerged at the same time: Enterovirus, or EV-D68. Unusually high numbers of kids were showing up at ERs with severe breathing problems from EV-D68.
4-year old Eli Waller of Hamilton, New Jersey, died after coming down with EV-D68. So did Madeline Reid, a toddler in Detroit, and ten-year old Emily Otrando of Rhode Island. Was the same virus that sickened and killed some children, paralyzing others?
In five months, there were more than a thousand (1,153) severe cases of EV-D68, at least 14 deaths and 120 known cases of AFM paralysis, mostly young children.
Sharyl: The CDC, normally quick to raise alarms and speak on TV when there’s any threat of infectious disease, wasn’t saying much at all this time. They declined our repeated interview requests and instead pointed me this video they provided on Web MD.
Brian Rha, CDC Medical Epidemiologist: “Infants, children and teenagers are most likely to get infected with enteroviruses and become ill.”
The video offered little insight. I requested more information under the Freedom of Information Act. It took CDC more than a year and a half to begin turning over documents. Internal emails show CDC trying to figure out what was triggering paralysis in some of the kids who had the EV-D68 virus. Was it exposure to West Nile virus, insecticides, international travel, or vaccines, particularly oral polio vaccine? Officials say they still can’t pinpoint the origin.
One physician, who treated dozens of the paralyzed children, seemed to be looking at the bigger picture: Dr. Benjamin Greenberg. In emails, Dr. Greenberg wondered if we were seeing the 21st century version of polio. If it is “in the early stages of evolution,” he urged CDC, “We can get ahead of it.” I recently tracked down Dr. Greenberg of Children’s Health in Dallas and UT Southwestern Medical Center.
Sharyl: What's the difference between what we're seeing with these children and polio?
Dr. Benjamin Greenberg: Not much, which is interesting.
Greenberg filled in a lot of blanks on the mysterious afflictions, where CDC would not.
Sharyl: Is it accurate to say this is less contagious than polio?
Dr. Greenberg: We don't know yet. Part of what we're lacking is the ability to go through a population and determine who has been exposed to this virus and who hasn't. We looked at the papers written 100 years ago, describing cases of poliomyelitis in the U.S., and we talked to colleagues from around the world who are actually part of teams who treat polio cases. And to all of our surprises, basically what we were seeing was a polio-like illness, but not from the polio virus.
Sharyl: Millions of people had been infected with this EV-D68, but a relatively few actually come down with the paralysis. Do we have any idea why those certain children get paralyzed?
Dr. Greenberg: We don't know that yet, but it's worth noting that that phenomenon, that the same virus can infect thousands, hundreds of thousands, or even millions of people with only a few individuals having catastrophic events from the virus, is true for almost every virus in human biology.
At its worst, polio killed 3,000 (3,145) and paralyzed 21-thousand Americans (21,269) in a single year back in 1952. In 2014, there were 120 known cases of AFM paralysis in the U.S. In 2015, there were just 21. But last year, the number surged to 138. There have been five confirmed cases so far this year.
Sharyl: Did polio have a pathology that was anything similar to what you're seeing now?
Dr. Greenberg: So if we look at the history of polio, at least in the United States, it started with small outbreaks and then would disappear for years and then reemerge.
Sharyl: The question is whether AFM paralysis is following a similar pattern of surfacing, receding and surfacing again in a bigger way.
Sharyl: Clearly, it's not a one-time event?
Dr. Greenberg: Clearly, as we saw in this last year, we see, we had a spike in cases again and so we know that this virus has the capability, if it is the cause, to come back and to cause damage.
Sharyl: With CDC saying so little publicly, families struck by the horrible illness, like McKenzie Andersen of Albany, Oregon, have found each other on Facebook. McKenzie went from having a cold to being paralyzed from the neck down and on a ventilator in 12 days.
Sharyl: CDC is firmly refusing to disclose how many cases are in which states, even though that information is public in nature. CDC told me it has “not received any reports of death” from AFM paralysis. But with the health agency so tight-lipped about these cases, some families wonder if the numbers are underreported.
Sharyl: The family of 14-year old Isaac Prestridge of Louisiana says CDC originally said AFM caused their son’s death. He got sick last October, complaining of a “weird feeling in his knees” and died two days later. But when Isaac’s case didn’t show up in CDC reports on AFM deaths, the family asked why. They say the CDC then told them it had “reopened” Isaac’s case and eventually attributed his death to a different form of paralysis.
Carter’s family says CDC won’t count his case either, in their published statistics, despite Carter’s doctors describing it as “characteristically AFM.”
Sharyl: Some of these kids die?
Dr. Greenberg: They do. It is, it is a very rare event to have death related to acute flaccid myelitis. Unfortunately, it has happened.
Sharyl: Although the one-two punch of EV-D68 and AFM paralysis has been more damaging over the past three and a half years than much more publicized diseases, it’s still in the shadows.
Sharyl: More kids have been hurt seriously with this than Measles, Ebola, and Zika combined, but you don't hear anything about it?
Dr. Greenberg: So there are some scientist reasons to have priorities around Ebola, Measles, and Zika that are very valid. Enterovirus D68 is a common virus with a low rate of causing significant paralysis or conditions that lead to disability. And so the decisions have been made that, while it is a problem, while it is a concern, it may not garner the level of need that some other public health issues do.
Sharyl: Do you agree with that?
Dr. Greenberg: I wish we had the resources to do it all.
Greenberg says there’s reason to hope that AFM isn’t the beginning of another polio like epidemic. So far, he says, the rate of paralysis after infection seems lower than it was with polio.
Dr. Greenberg: The number one question we get asked is about rehabilitation and recovery. Will children get better after the event?
Sharyl: And what's the answer?
Dr. Greenberg: They do. It's very slow, and it takes a lot of work. When we stay aggressive and we push and we stay with a routine, we're seeing slowly but surely improvements occur.
Sharyl: Today, Carter is out of the hospital and back at home in Richmond, Virginia. There’s been no improvement in his condition, but he’s considered “stable.”
Christopher Roberts: From what I've seen, what I've read and heard there have only been two children who have recovered fully. It's very hard from day to day. We are day to day, almost hour to hour.
Believe it or not, AFM paralysis isn’t a “reportable disease” like West Nile virus or Measles, meaning doctors aren’t required to report cases. Dr. Greenberg thinks that should change. In fact, he advocates a broadened surveillance system to track all kinds of sudden paralysis to better find answers as to what’s causing them.