Sharing my experience as a 26w, 900g premie - and offering to answer (reasonable) questions
Hey everyone. I was born in early 2000s, a former micro-preemie (26w, 900g) and I'm 23 now. I know a lot of parents on here are scared, and it’s a day to day struggle in the NICU, and I wanted to be honest about my experience, and share how things turned out long term for me.
My health journey hasn't been totally flawless. Everyone thought I was fine for a long time because my needs were managed well, but I have struggled with lifelong limb/joints issues that were undiagnosed in childhood, no doctor could figure out why, but with advances in medical field all the time, currently specialists hypothesize it might be due to a genetic cause, or mild CP. I can walk, and even run, but experience significant pain, trembles, and lifelong exhaustion from movement. I often use a cane of some sort now as an adult to manage it. I was also diagnosed with medium-need autism, which doctors said is a direct result of being a preemie. And I have fairly bad eyesight (around -5 approximately) which requires prescription glasses since I was around ten years old, which I was later told by my parents they expected this because of the unregulated oxygen level coming straight out of the wall in NICU, and that I was quite lucky to see.
I’m not posting this to scare anyone, but to give some big picture perspective. When you're stuck in the NICU, it feels like they’ll be a baby forever. I also want to mention it is not same for all babies, some will end up perfect and others more unfortunate. It’s scary and unpredictable and I recognize mine is one outcome among many possibilities.
But if any micro-preemie parents want to ask questions about what it was like growing up or what helped me as a kid, feel free to ask. I put “reasonable” in the title as some questions might prove too sensitive or private due to the nature of this topic, but I’ll happily answer most questions.
Sending love to everyone struggling right now.