Wear Your Mask

This is what a child on ECMO looks like: my son at three and a half.

             

About 18 and a half years ago our youngest son got some childhood virus, Roseola, as kids will. He was three and a half and had never really been very sick before. At first, he didn’t seem to get too sick from this one either, but we now know that it takes him much longer to recover from viruses than the rest of us because his cells go into an energy deficit due to what we now know he has, mitochondrial disease. After about a week of just being tired, but no longer sick, he began to revert in his walking patterns, using furniture to hold himself up. He ate continuously, sat around and did very little even falling asleep at the table in the middle of eating, and within a couple of weeks he had gone from a little over forty pounds to another ten pounds in weight gain. Remember, he was just over three years old. We became frantic, taking him to our doctor every day as he began to struggle with breathing. He had blood tests, a terrifying MRI from which he struggled to wake (as mito patients will do from the wrong anesthetic), and finally our doctor sent us to Seattle Children’s Hospital, where at the end of the weekend he grew even more sick to the point of both lungs succumbing to complete diffuse hemorrhaging. That Sunday night and into the very early hours of Monday he was, with our permission, put on a ventilator and then ECMO (extra corporeal membrane oxygenator), a heart lung bypass machine used to oxygenate the blood in absence of working lungs. Our son was drowning in his own blood because of an energy deficit and organ shut down caused by a virus that for most is typically benign. He was on ECMO for a week and the ventilator for two weeks and we stayed in the hospital for three months, bringing him home with a jog stroller and orders for tons of rehabilitative therapy to get him to eat and walk on his own.

Now, during this COVID-19 pandemic we are becoming more and more wary of people, knowing full well that we can not bring this disease home to our son. Wen this all began I thought it seemed a bit overblown since there was no evidence of the disease in our very rural area. We have typically been vigilant against other known viruses such as Lyme Disease and West Nile Virus just using insect repellent and avoiding buggy areas, but we have not enclosed our son in a bubble because we believe in living a full life. Now that everything has been shut down and people are tired of going half a year without vacations, normal shopping, movies, school, etc. the disease has made it here, as I discovered by possibly being exposed in my quest to start our school year responsibly. People here have had no evidence of the severity of the disease and they no longer have the capacity to take it seriously. I cannot be one of those people. I must take all viruses seriously in my home, even as we have always resisted living in a bubble. My son endured another bout of illness, probably contracted on an airplane, and again was hospitalized when he was in the third grade and we had returned from a summer vacation in Europe. This second bout seriously made us rethink how we expose him to the outside world, yet he has continued to live his life as an active member of our community, constantly raising awareness of mitochondrial disease.

Now that the country wishes to return to school, now that I have missed two weddings for important people in my life, now that I have to evaluate what I am going to do this year as my final year of teaching I will be physically distanced and I will wear a mask and shield. I will cause my students grief when they poo poo my vigilance. And I don’t want to be vigilant only for my own family, but for others as well. Remember that I lived for three and a half years blissfully ignorant that anyone in my family was so vulnerable to seemingly invisible opponents. I know that so many of us are unwittingly vulnerable to this very real disease and I wish to protect those people as well. So I implore you all to wear your masks when you are with others outside of your immediate circle. Protect yourself. Protect us all.