Alright so my 26 weeker took his Bayley test today. And the fact that a cognitive score under 85 on this test is considered a “moderate to severe” NDI is INSANE y’all. INSANE. This is about to be a whole thread so stay with me.

Trenton scored a 93 on the cognitive portion. So he was within “normal” range. (I despise that phrasing, but that’s beside the point.) The point is I GUARANTEE you T could take that same test another day and easily score below an 85.

The test took almost 2 hours. TWO HOURS. How many 2 year olds do you know that will perform like a trained monkey for 2 hours??? T was in a particularly great mood this morning and hung in for about the first 45 minutes. After that he was so DONE.

He wouldn’t point to any of his body parts (which he does daily) wouldn’t balance on one foot or jump (also does daily) and wouldn’t identify pictures that he definitely knows. So he doesn’t get credit for any of those things that he does regularly.

In other words, I know his true score is much higher. But if it had been this afternoon (his more fussy and uncooperative time) I can promise you his “score” would have reflected less than 85, which would have placed him squarely in that “moderate to severe” impairment range.

Yes I mean this one right here. The one that some drs use to terrify expectant parents regarding their micropreemie. T scored an 83 on the motor portion, which would technically put him in that “moderate to severe range” for motor skills.

THIS child y’all. This one. His motor skills would be considered “moderately to severely impaired”

Not to mention most of the cognitive portion was RIDICULOUS. When I say he could have so easily scored below an 85 there I am not kidding. Bottom line: Don’t use these outcomes to judge your child’s potential. Don’t use them to decide if your child is “worthy of being saved.”

So let’s just play with some data. Let’s say you are 22 weeks pregnant with a girl. You have time to receive steroids. There is a 32% average chance of survival with only 5-11% chance of PROFOUND NDI. But what will drs quote?

They will quote that 12% survival statistic. Please note that is WITHOUT ACTIVE TREATMENT. Then they will say there is up to a 78% chance of moderate to severe NDI. Sounds scary, right? But all that really means is a Bayley score under 85....

This has to change. Using this data this way is a gross misrepresentation of what it really means and it breaks my heart that parents are using it to make life and death decisions not knowing what it really means. Rant over.

*just to clarify the 12% survival rate I referenced is for ALL babies that GA. Including those not provided any life saving interventions. I realize I phrased it oddly.