I saw a post tonight that pushed me to write this. Something that has been weighing heavily on me since fall hit. “Has anyone’s 21 month old had COVID? How long did it take for them to recover?”
He didn’t. He died.
Our family caught COVID at the end of February lasting into the beginning of March. Ivars was the only one that didn’t catch it of the four of us.
Charlie never completely got better. He had a weird gurgle as an infant we were told he’d grow out of because it was “underdeveloped vocal cords”. It came back after he caught COVID. He couldn’t shake his cough so he was put on Ventolin. It made a slight improvement until March 12. The first time we’d take Charlie to the hospital.
He had developed this awful sounding cough. We woke up in the morning and he just sounded weird when he was breathing. He was coughing this painful awful cough. I was supposed to read at church then head to work for a mental health training I had organized for the staff. I’m pretty sure, this would be the last time we would be there for a regular Sunday mass. I knew he needed someone to look at him but knowing he was on a puffer I wasn’t sure if it was worth going to emergency. Fortunately they had a cold and flu clinic. I booked the first available appointment and we headed to church. But I was super anxious. SUPER anxious. Something wasn’t right and I could feel it in my gut. So much so my dad ended up reading for me while I curled up in the church bathroom. It was like the fresh air made it worse for Charlie and now we were really worried. I called work and send I’m not coming.
We got to the cold and flu clinic. They listened and said they could hear the noise but his lungs were clear. They said it was probably post nasal drip and some inflammation and irritation so they prescribed a saline nasal spray and a steroid puffer. That steroid puffer bought us two more weeks of normal life with him. What they didn’t do though is an x-ray. They told us they could just to make sure it was clear but they assured us from listening they felt confident it was. They felt doing it would be more distressing for him and unnecessary so we said we’d try the puffer and trust them.
We aren’t sure if having done the x-ray would have helped anything. If so they’d probably see he wasn’t okay. Chatting though with the family doctor there’s a possibility he would have then been admitted. That would likely have set in motion the chain of events that would take him from us. Instead, in his last two weeks before he actually was admitted, he got to see many of his cousins, do his first finger painting, celebrate Mommy’s birthday, and see our dance friends for the last time. One last snuggle with Miss Kelly. And a chance to meet his little cousin who conveniently arrived a few weeks too early.
Yes Charlie had Leigh’s Syndrome. Yes it’s fatal. Typically the event thought that sets things in motion is a viral respiratory illness that the body can’t recover from.
It was Charlie’s lungs that gave out. So full of fluid. Indications of fluid from a virus, fluid from micro aspirations from drinking liquids and not being able to swallow properly. The two combined caused a strain on his lungs. He was hospitalized and sedated and from there his brain would start to struggle to fight and the lesions would progress quickly.
I didn’t get my flu shot or my COVID booster last year. I’m allergic to an ingredient in the flu shot so I have to get mine ordered in special at the doctors office. Apparently there was a shortage last year so seniors were the priority.
I had a reaction after my last COVID booster so I was supposed to go see the allergist before getting my next one. Charlie had started having his delays by the time public health had been back in contact with me so I put the allergy testing on hold. I wish I hadn’t. I recently met with the allergist who said based on when my symptoms occurred the type of symptoms I had would have been present right after I got the shot not the next day. He doesn’t think I am allergic to anything in the booster. I will be getting my next one in his office just in case. I cried. I could have protected Charlie. I actually wanted in that moment to be allergic to it otherwise I missed it for no reason. Ivars was the only one of us in the family to get his COVID booster last year and the only one who didn’t catch it.
As cold and flu season hit I’ve been stressed. It’s a horrible reminder. I hate hearing people say “it’s just a virus” “It’s no worse than the flu” “it’s just the flu” “we got it before and we were fine”. Sure. Charlie was too when he caught it in 2022 but he wasn’t in 2023.
I think of all the people who would say that during lockdowns or masking mandates that perhaps the immunocompromised people should just stay home instead of making others suffer by wearing masks. We didn’t know Charlie was immunocompromised. With his short life why would it have been fair if we did know for us and for him, to keep him hidden away at home instead of enjoying what time he had with us?
To me it seems so simple. If you are sick or your kids are sick keep them home. I have a few health conditions that sometimes, I can question “am I sick or is this just an exacerbation of my pre-existing conditions?” So I throw on a mask during the fall if there’s even a slight chance I might be sick. I’d hate to think that someone brought what they thought was a healthy child to dance and lost them because they got the flu that I brought in. Sure it’s a slight stay home for a few days or uncomfortable to wear a mask but at least I’m not spreading it. I get for kids it sucks to keep them home from school or it upsets them that they miss dance. At least they get to return to life after. Unlike Charlie.
Charlie was making progress with the paediatrician and the occupational therapist before he caught COVID. We were so close to the end of cold and flu season. If we hadn’t been exposed when we were, he could still be in my arms. Not for ever, but for longer. He could have seen his second birthday.
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