Noah’s story: Enterovirus and a race against the clock

enterovirus“I’m so excited to babyproof my house,” says Elisa Holt. “I haven’t had to. Now, Noah wants to climb and do all of these normal baby things.”

The toddler, born in March 2014, sailed through his first six months of life.

As summer turned to fall, enterovirus D68 (EV-D68), a mysterious virus linked with paralysis, started to dominate headlines.

On Oct. 3, 2014, Elisa was nursing Noah when she realized something was wrong with her son. “I went to sit him up and he just fell over. I did it again and the same thing happened.” When she realized he wasn’t moving his feet, legs or toes, she called her son’s pediatrician, who directed her to Beverly Hospital.

“We are so so thankful for the emergency room doctor [Dr. Munirah Qualls] who told us, ‘I don’t know. I’m going to send you to Boston Children’s Hospital.’ I know Noah would not be where he is today if the Beverly Hospital doctor did not move us as fast as she did.”

Within 15 minutes, an ambulance arrived to rush Noah to Boston Children’s. The emergency department was on high alert for EV D-68 — a tricky virus that can mask itself as many other illnesses.

“Noah’s doctors were racing against the clock to make a diagnosis,” Elisa says.

She and her husband Mitch cuddled their baby boy.

“We were waiting to see what Noah’s future held. How did we end up here? Would his paralysis be reversible?”

Initial results narrowed Noah’s diagnosis to two conditions: Guillain Barre Syndrome or a type of myelitis possibly caused by EV-D68. Because both conditions are treated similarly, Noah’s doctors started treatment with immunoglobulin therapy and steroids.

The next day, an MRI confirmed Noah had Acute Flaccid Myelitis (AFM), a disorder caused by inflammation of the spinal cord. Enterovirus has been linked to AFM, but researchers have not confirmed the virus causes paralysis.

“Mitch and I were really scared. We were afraid to touch Noah because we didn’t want to hurt him.”

What is enterovirus?
Enteroviruses are common viruses. Every year, they cause about 10 to 15 million infections. They can cause colds, along with fever, headaches, vomiting, diarrhea and rashes. Enteroviruses are most often seen in the summer and fall.
Enterovirus D68 (EV-D68) is one of more than 100 non-polio enteroviruses that have been linked to paralysis. EV-D68 has not been proven to definitively cause paralysis.
A child’s recovery from enterovirus depends on many factors. Children who present at a younger age tend to have a more guarded prognosis and those whose initial presentation is more severe take longer to recover, says Gorman.

Noah’s medical team ­— Dr. Michel Fayad, Dr. Miya Bernson-Leung and Dr. Mark Gorman, along with scores of nurses — eased his parents’ fears and became part of the Holt family.

“They listened to us and supported us and gave us honest answers to our questions.”

The answer to her scariest question ­— “Will Noah recover?”— was anything but comforting. “We don’t know,” the Holts were told. Time would tell.

After an eight-day hospital stay, it was time for the Holt family to return home. Noah was just starting to twitch his toes, wiggle his arms and support his head.

“It was a little nerve-wracking leaving the nurses and physicians who had taken such great care of our family,” says Elisa.

She and Mitch focused on the next step of Noah’s recovery — physical therapy  — which started with twice-weekly sessions. Dr. Donna Nimec, a physiatrist at Boston Children’s, joined Noah’s team.

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When Noah’s in-home physical therapist ­— Dr. Jenna Elie from Northeast Arc ­­­­— noticed Noah’s progress, she recommended a developmental specialist and an occupational therapist for supplementary support.

“We’ve collaborated with Dr. Elie and Noah’s team to advocate for many types of therapy services that have proven to be just what Noah needed in his recovery,” says Elisa.

After she read that music therapy helps stroke and spinal cord patients, Elisa asked if Noah could have music therapy. Noah’s treatment has expanded to include not just music therapy but also pool therapy and hippotherapy (horseback riding), which builds Noah’s core strength and balance and mimics a person’s gait.

Every six months, Elisa, Mitch and Noah return to Boston Children’s for an appointment with Gorman. “I love coming back and showing everyone how far Noah has come.”

Noah, who turned 2 in March, has just started walking in a gait trainer and can standing holding on to things.

“He is succeeding beyond anyone’s expectations,” says Elisa. Every day, Elisa and Mitch tell their son, “We are strong, and we try.”

Elisa and Mitch held Noah's Night at Anthem to honor his team for their dedication, support and work that they do every day. L-R: Dr. Miya Bernson-Leung, Dr. Michel Fayad, Mitch, Noah, Elisa,  Jenna Elie  (NeArc), Kim Pelliter (NeArc), Dr. Ian Sklaver (Garden City Pediatrics) and Kelly Stapleton (Garden City Pediatrics)
Elisa and Mitch held Noah’s Night at Anthem to honor his team for their dedication, support and work they do every day. L-R: Dr. Miya Bernson-Leung, Dr. Michel Fayad, Mitch, Noah, Elisa, Jenna Elie (NeArc), Kim Pelliter (NeArc), Dr. Ian Sklaver (Garden City Pediatrics) and Kelly Stapleton (Garden City Pediatrics)

Learn more about the Boston Children’s Department of Neurology.