Thread by @jvmlost

Today I realised, 17+ months after we were infected that we have suffered severe consequences of COVID, my son & I. And then I realised that my baby has long COVID.

Now that I see it, I’m shocked by the cognitive dissonance of not seeing it earlier. 1/

I’ve told the story many times of catching COVID at 34 weeks pregnant, despite many precautions and vaccines. Probably from my FIL (in town to care for older child, given impending birth) who probably got it at the library getting books for said older child … 2/

I was infected & bedridden within a few days. I had no outward symptoms that anything was wrong for baby. But I had a very thorough doctor, and she discovered that my placenta wasn’t working properly. This is organ failure. That’s what that is. This is a severe outcome of C19..3/

My baby was nearly stillborn. With less effective medical care, he would have been stillborn, within a few days, there is no doubt. We were fortunate that the medical system still worked and I was able to have an emergency c-section…4/

We were immediately plunged into immune deficiency problems. My poor tiny little newborn was pummelled with frequent infections and opportunistic infections. We went nowhere except medical appointments. We saw no one, except in-laws, and 1 friend who dropped off food….5/

Regardless of what we did, he kept getting sick. We all kept getting sick. But him worst of all. Doctors were confused about how he got random cow bacteria in his eye, for example. He had several rounds of antibiotics before he even reached 3 months old….6/

You probably have cute pictures of your baby during their first 6 months of life. I don’t. Most of his pictures show a weak and sickly baby, who smiled in his sleep, and struggled while awake. Sallow and distant eyes. In pain. Struggling. 6/

He had trouble organizing his anatomy on the right side, weakness all along his limbs and body. His hand was curled and wouldn’t uncurl. He had trouble controlling his mouth/neck. So he had trouble eating & vomited a lot. Like, a lot. 10-30 times a day a lot... 7 (actually 8)

By 4 months old, he was missing milestones. This got worse over time. More by 6 months, more still by 9, etc etc. I can’t even look at what other kids his age are doing. The gap is so great now, and it’s upsetting. And it was preventable. This did not have to happen to him…. 9/

He is the sweetest, kindest hearted little guy. COVID did not take that from him. But he no longer smiles in his sleep.Maybe that means something, maybe it doesnt. So much of his life is hard, frustrating, a struggle. He’s 16 months old & just meeting some 9 month milestones..10/

The scientific coming does not care. I participated in a study about women who catch COVID while pregnant. No response or follow up to my story. The resultant study, when published, did not seem to report our case or outcomes, oddly. No negative outcomes in BC, they said 🧐 …11/

The medical community also doesn’t care. I have to advocate for appointments, when the need is obvious. I have to advocate for masking, when the need is obvious. I have to bring my own machines to clean the air around my baby because he can’t mask and the govt won’t do it …/12

I must argue with doctors so they wear high quality masks, or walk out. I must provide masks to medical professionals in the community, bc our government won’t provide them w/ appropriate PPE. I must clean the air of their facilities bc they don’t know that #CovidIsAirborne ..13/

Through all of this, I find myself being constantly judged & questioned, as if I’m overreacting, in wanting to protect him. I find myself often apologizing, using words like “delays” or “pregnancy complications”. I cite studies about neurological damage in those born to C19…14/

What I finally FINALLY realized today was that I’m using the wrong words. Instead of ‘pregnancy complications’ I should say: we had severe outcomes from a COVID infection. Instead of ‘ongoing delays’ I should say: my baby has long COVID. And from now on, I will. #CovidIsNotOver