What we know about the coronavirus and cerebral palsy

When the pandemic became a reality in March, I didn't think Max was at more risk than my other children for complications from the coronavirus. Although he has cerebral palsy with an underlying seizure disorder, he is a generally healthy teen. But I soon grew concerned, hit up some doctors I know, worried more after I heard one of their responses, worried less after I heard the other, read a study that just came out and worried all over again. I'm sharing what I've heard from reputable sources and hoping that you will also chime in, since there is surprisingly little information out there about the coronavirus and how it affects people with cerebral palsy.

The fatality rate for COVID-19 for people with intellectual and developmental disabilities is 4.5 percent, compared to 2.7 for others, finds a new study published in the Disability and Health Journal. It tracked medical records of 30,282 people with the virus, including 474 with intellectual and developmental disabilities such as Down syndrome, cerebral palsy and intellectual disability. While the data did not reveal why people with IDD were more likely to die from the virus, the results did confirm that people with IDD are more likely to have underlying conditions including heart disease, respiratory disease and diabetes often associated with poorer outcomes from the virus. There is still so much that is unknown about this virus.

The U.S. Centers for Disease Control notes that having a disability alone is not necessarily related to being at higher risk for getting COVID-19, or contracting a severe illness because of it. The information on the website correlates with the above: If a person with disabilities has a chronic underlying health condition, they could get pretty sickened by Covid-19. That's true of all people, and it remains unclear on whether a person with disabilities who has an underlying health condition is at any higher risk than a person without disabilities who has an underlying health condition.

What's tragically true is that adults with disabilities living in group homes in New York have been severely impacted, The New York Times reported back in April. An article I read yesterday noted that since March, 2160 residents in New York had gotten the virus and 353 had died—a rate of more than 15 percent.

Several weeks ago, I had a shocker of a conversation with Max's longtime neurologist. He informed me that if Max got COVID-19, he could have issues with his pulmonary function because of his motor issues. Basically, this virus is a bad thing for lungs. At best, the infection causes a cough and shortness of breath. But if it goes deep into the lungs, it can lead to pneumonia and acute respiratory distress syndrome. The doctor acknowledged that while he did not have firsthand knowledge of Max's lungs, he said that his CP could impact his ability to move lung secretions and maintain good breathing. He advised us to stay at home, which we were already doing, and in particular to not let Max go to any public gatherings in the upcoming months. And if school was in session in the fall? Well, he wouldn't recommend sending him.

I was so freaked out, it literally kept me up night after night. So I did what I usually do in these situations: I sought more information. I found out from someone I know who has done much advocacy work for cerebral palsy that the person's network of doctors was not putting patients on lockdown unless they had an underlying lung issue, a trach tube or had been hospitalized for pneumonia.

Then I hit up a wise, warm and caring doctor I know who has specialized in treating children and adults with CP for decades. He noted that he treated a woman in her forties with CP who's been fine, while her 40-year-old brother in perfectly good health spent 18 days on a ventilator before recovering. To date, he said, he had not seen any data to suggest that cerebral palsy in and of itself increased the risk of infection or what he called a "severe clinical course." However, if someone with CP has had pneumonia or pulmonary problems that had led to scarring and decreased lung capacity, those patients would be at higher risk—aka secondary issues related to cerebral palsy that occurred over time.

He noted that one of the greatest risks came from increased age, and that Max's youth was probably the strongest thing in his favor. He recommended we stay put at home, at least until July, and reassess then. He also felt it was too early to make judgments related to the fall.

I felt somewhat relieved, although we are sure not letting our 'rona guard down. Max is staying at home this summer. And for the indefinite future, our family is not venturing out to stores, salons, or basically any indoor public space.

What have you heard from the doctors and specialists in your world?