There’s this interesting part of having kids who were not supposed to be ok but ended up being ok that I didn’t expect…
When your kids are ok, no one weighs in on how to best take care of them. My ex-micro-preemies have nearly a clean bill of health. We only see a couple of doctors a couple of times a year, and they tell me they look great and to keep doing what I’m doing. It’s reassuring, sure. But they are still ex-micro preemies, which puts them at higher risk for learning disabilities and health problems.
Because there is nothing wrong with them right now, their traditional providers don’t have much to share in the realm of preventative medicine. So I’ve been researching what we can do for gut health, brain health, respiratory health, and immune support.
The internet is full of information, the trouble is most of it isn’t useful. I’m not going to put anything in or on my kids that hasn’t been studied clinically. Anyone can write anything (myself included) and put it on the internet, and while it’s a nice starting point, I am looking for approaches that are substantiated by real research.
It’s really hard to find real research, though—especially research regarding micro-preemies. Three generations ago, neonatologists weren’t even saving three or four-pound babies who just needed an incubator and a feeding tube. We don’t have decades of research on tiny babies that’s readily available for the micro-preemie moms who are looking for it.
Over the last few weeks, I’ve reached out to doctors, clinics, and medical device companies asking if they have access to any research on things like red light therapy, plant-based diets, and chiropractics for ex-micro preemies or even regular infants. The response has been less helpful than I had hoped. The medical community doesn’t like to test their ideas on pregnant women and babies unless it’s some kind of last-ditch effort to save a life.
All of my dead-end research got me thinking about how hard it is to be proactive and to pursue alternative medicine for a preemie. I have a network of doctor friends. I know how to research. I have strong writing skills to make requests, but what about the people who don’t have all of this? What about the less connected, less educated, under-resourced moms who still want to do what’s best for their babies but don’t know where to start?
I wish I was writing this with some kind of proposal–a solution or a plan to arm parents of preemies with all the preventative practices they should adopt to give their kid(s) the best quality of life. Not only is that kind of information not readily available, but even if it were, who could afford it? Red light therapy starts at around $400, a chiropractic visit could cost upwards of $250 per baby for an initial visit. Organic vegetables are sometimes four times as expensive as conventional ones.
All moms have to advocate for their kids in one form or another, and moms of preemies and medically complex kids know they have to advocate, but sometimes it’s unclear exactly how they should be doing that.
The information is hard to find, the treatment is often expensive or complicated and not covered by insurance, and it’s overwhelming because there is rarely consensus on whether or not it’s the right decision. We have incredible doctors who saw our daughters through their NICU journey and continue to see them outpatient, but they don’t condone preventative treatment that they don’t understand. And I don’t blame them, I just wish they understood it. I wish there were research. I wish I didn’t feel like I was pioneering preventative care for my micro-preemies.
I just finished reading Sarah DiGregorio’s book Early: an intimate history of prematurity and what it teaches us about being human. DiGregorio writes about the disparity between races and economic classes and how it affects both the chances of having a premature baby and the type of follow-up care that a premature baby receives.
As I’ve spent hours reading and researching, my heart has been so heavy for all the women who have the desire but don’t have the luxuries I do, and I don’t know where I go from here. But I do know I have to keep searching and learning and trying and sharing, and maybe one day when I’ve done enough of that, I’ll be able to do something for all of us.
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