For Children with Special Needs, Telehealth Visits Are Here to Stay
My son Charlie was born with a rare genetic condition which increases his chances of developing certain cancers in the kidneys and liver. For the early years of his life, he was required to get ultrasounds every three months and blood draws every six weeks to monitor these potential risks.
All appointments took place in the research hospital where he was born. The specialists worked here. The cutting-edge technology and the newest methodologies stemmed from this one hospital in the heart of our downtown. It’s why children with rare genetic conditions like Charlie go to this place.
As an infant, Charlie had a tracheotomy and a gastrointestinal tube, which left him immunocompromised. I took an extended leave of absence from my job as a high school English teacher to be his primary caregiver rather than send him to a childcare center. We did not leave the house. I researched physical, occupational, developmental, and feeding therapists that would come to us rather than us going to them. We had an entire room dedicated to his therapy and medical equipment. Our house was sterile (as sterile and sanitized as a 1920s suburban ranch-style house can be). I felt safe there in that familiar environment where chances of contamination and contagion was low. But I could not bring the specialists, the ultrasounds, and the lab technicians who did his blood draws into our home. So, I battled the traffic, the crowded parking garage that smelled of cigarette smoke and fuel, the waiting rooms, and the bathrooms where used diapers lay like abandoned stuffed animals in the corners. I did what I had to do for Charlie, because that’s what they said was necessary to keep him healthy. Until it didn’t.
Before he turned one, Charlie contracted RSV at one of these visits. His oxygen saturation rates dropped below eighty. He could not breathe, could not lift his head, could not take what little milk he was trying to drink by mouth. My husband was out of town. I drove Charlie to the emergency room in that middling time of night that is not yesterday or tomorrow. A nurse met us in the waiting room and whisked him away from me. She did not wait for me to check in. He was put on oxygen and spent several days in the pediatric intensive care unit. I sat in in the vinyl chair that was supposed to rock but didn’t holding tissues I did not use. I was in shock. We had spent the first three months of his life in the neonatal intensive care. I had never wanted to go back. Yet here we were.
Once he was recovered and home, we continued our visits with the specialists at this hospital. I didn’t know enough to ask for another option. To be honest, there weren’t any other choices back then. People drove hundreds of miles from nearby states to have their children seen by these people. I told myself we were lucky.
Flash forward to 2020, the year Charlie turned seven and the beginning of the pandemic. By then, Charlie no longer had the trach or the g-tube. His risk of cancer also diminished as he aged. His ultrasounds were every six months and the blood work was once a year. His birthday and annual well-visit fell in March, right as everything shut down. The pediatrician emailed me to ask if I would like to schedule a telehealth visit. I had to ask what that was. At this point, we were all learning what it meant to live virtually. So we Zoomed. Charlie sat in his supported chair in the comfort of our living room and waved ecstatically at his doctor while she and I chatted. I wore house shoes. I did not need to get my parking validated. It was lovely.
And now that the risks of infection are low and vaccinations are available for children? I still request telehealth visits whenever I can. There are certain appointments that require his body to be in the room with the professional, of course. But if we can avoid both the inconveniences and the risks of an in-person visit, then we will. I will be a loud advocate for virtual health as long as it makes sense. Just as many employers realized their company can do just as well with many employees permanently working from home, I believe the same can be said for our healthcare system. Whether we are at the tail-end of the pandemic or not, telehealth needs to stay.
