Boy’s rare illness went undocumented
Asia Colbert was convinced her son was alone.
Since he was discharged from Children’s Hospital of the King’s Daughters in Norfolk, she believed he was the only child in the region to have acute flaccid myelitis, a rare illness similar to polio that starts with a seemingly innocuous cold but leads to paralysis.
According to public health records, it’s almost as if what happened to Palmer Colbert didn’t.
The state’s disease surveillance data doesn’t show any sign of his four months at the hospital, an ordeal that, at its worst, put Palmer in intensive care, hooked up to a ventilator and feeding tube. It was then that Palmer regressed from a 20-month-old who ran, danced and was in the midst of potty training, to a boy unable to walk, sit up or say “ma” and “dad.”
Statewide, the Virginia Department of Health recorded three cases of acute flaccid myelitis, or AFM, in 2016. But since then — including last year when Palmer was diagnosed — the agency has documented none.
The disease, which has struck fear in parents across the United States and baffled the medical community, affects the nervous system, especially inflaming the gray matter of the spinal cord. That leads to muscle weakness in one or more arms and legs. It also can cause face drooping and breathing and swallowing problems. Nearly all of the patients are hospitalized for extended periods.
Most reported cases of AFM have occurred in young children. And there’s no telling how long their paralysis will last. Little by little, some patients have recovered movement and sensations with rehabilitation; others have remained unable to walk, speak or breathe without help. Epidemiologists are puzzled over what puts certain people at risk of getting the illness and how to stop it.
Though the condition is rare and not new, the Centers for Disease Control and Prevention observed a spike in AFM cases in 2014. That was followed by an every-other-year surge, with peaks in 2016 and again this year. Now the federal agency is investigating 273 suspected cases for 2018, with 106 confirmed in 29 states. That’s a dramatic uptick from the 33 cases recorded nationwide last year.
During the two prior spikes, the CDC confirmed 149 and 120 cases in 2016 and 2014, respectively.
It was almost exactly a year ago, Nov. 29, 2017, when Palmer’s day care provider sent a text message to Colbert that something was wrong. She left work to pick up her son, thinking maybe he was having a reaction to his recent flu shot.
What she found was a dramatically different version of Palmer than the one she left that morning.
“He was dead weight, head just hanging off her arm,” Colbert remembered.
Palmer, who also has asthma, was struggling to breathe. His inhaler was no help.
Colbert took him to Sentara Princess Anne Hospital in Virginia Beach. After the ER gave him painkillers and asthma treatments with no improvement, they trans- ferred him to CHKD. When Palmer was admitted that evening, the diagnosis was acute bronchiolitis and rhinovirus/enterovirus, common colds that have been linked to many AFM cases.
By the next day, Palmer’s breathing was so labored he was intubated.
But it wasn’t until later in December that doctors would call his mysterious condition AFM. Dr. Ryan Williams, one of several CHKD neurologists who saw Palmer, said his team was consulted after the child was weaned off sedation from being intubated. It was only then doctors recognized Palmer had lost some motor functions.
“His case is a cautionary tale that if a child has weakness that seems out of proportion to what you would expect in a child who is presented with other types of respiratory dysfunction or other sets of symptoms,” Williams said, “there may be something different going on there than you had originally assumed.”
That’s where Colbert, her husband, Damarcus, and mother-inlaw Pat remember things differently. They say Palmer was feeling limp from the first day of his illness. When they noticed that the toes on his right foot were turning purple, Asia Colbert said hospital staff rationalized it was probably the result of a tight shoe.
The words “acute flaccid myelitis” were completely foreign to the family. They joined a Facebook group for AFM patients, which seems to be growing all the time, and found other children struggling with the same condition.
In fact, there are others like Palmer close to home who simply aren’t reflected in the cases documented by the state health department and CDC, an indication that AFM is happening more often — and in more places — than the data reveal.
At CHKD, Palmer was the second case the hospital had diagnosed since the 2014 outbreak, and there was another probable case this year that is under investigation. The hospital also has encountered other cases: Though it wasn’t the facility that diagnosed the patients, three other children with possible AFM were treated at its inpatient rehab, a hospital spokeswoman said.
The reason cases may seem to be falling through the cracks is that, unlike mumps, tuberculosis, rabies and more than 70 other diseases, AFM is not among the illnesses Virginia legally requires physicians and labs to report. That’s why the state distributed a letter to clinicians about two weeks ago, encouraging them to rapidly report AFM through a catch-all category, described as “unusual occurrence of disease of public health concern.” Suspected cases are confirmed through testing.
“Because AFM isn’t officially reportable, we know that of all the cases that get reported to us, it’s an underestimate,” said Marshall Vogt, a state epidemiologist.
While Palmer was hospitalized, the reality of his severe illness sank in for his parents: The hospital counseled them in January on the option of a tracheostomy, a surgery that would have created an open- ing in his neck for an airway tube.
The couple refused, wanting to see how he managed after the staff removed his intubation tube.
To the Colberts, it felt like the whole hospital fell silent while they watched for him to breathe.
Today, not only can Palmer breathe without oxygen assistance, but he also can eat and speak. His left side continues to be weaker than the right, and both of his hands are curled into fists. But on his own, he can glide or Army crawl across the floor.
About a month ago, he started to regain trunk control. Now he can sit up without the help of an abdominal binder.
For a recent check up, Palmer wasn’t wearing shoes, but his feet never touched the ground. His grandmother, Pat Colbert, carried him into Health Center and Urgent Care at Loehmann’s in Virginia Beach — the wheelchair can be cumbersome. But now that Palmer weighs 26 pounds, she’s not sure how much longer she’ll be able to lift the 2-year-old. She takes him to all of his physical therapy sessions.
Jennifer Barboza, a nurse practitioner, said there are no expectations for recovery in patients like Palmer, but the progress he’s made with occupational, physical and speech therapy is reassuring, she said. Whether he’ll walk again is anyone’s guess.
Palmer is old enough to notice that he can’t do things other children can. He begs to play basketball with his 6-year-old brother, Damarcus Jr. When he looks at pictures on his grandmother’s phone, he always swipes past the one of his dancing with a little girl. Pat Colbert thinks it’s because he doesn’t like seeing what he used to be able to do.
But for his dad, there was never a time he grieved over the knowledge that his son could be partially paralyzed for life. Less than a year ago, he was hoping to God they wouldn’t lose him.
“I thought my son was going to die, especially on the unit he was on. There were kids passing away around my son every night,” he said.
“I just feel grateful that he actually left the hospital.” Elisha Sauers, 757-222-3864, elisha.sauers@ pilotonline.com