Any experience from parents with babies with severe HIE?

[snarf]

I have a now 8 month old that at 1 week old went through a severe HIE. He had a very sudden silent aspiration that caused him to turn blue and have a 75 minute cardiac arrest. Just when the doctor called it, my little man found a pulse and came back to us. As you can imagine, his MRI was pretty bad, about 50% brain damage.
While this sounds devastating, my boy is doing AMAZING. He gets OT, PT, and speech therapy. He makes progress with every appointment. He’s able to move all his limbs, he’s quiet the wiggle worm. He’s giving us “agoo” when he tries to talk. He is so strong and growing like a weed.
Problems we’re facing now include possible blindness, too soon to tell how severe the optic nerve damage is. He struggles to grab and hold on to toys on his own. Not crawling yet but starting to learn how to scoot. He is currently g tube dependent with some really severe reflux.
Mostly I’m here wondering if anyone has any tales of what their lives with severe HIE babies looks down the road. Our doctors have never seen a case like our baby’s so answers are really few and far between.

 

[akj]

@snarf My son was born with what looked like moderate to severe HIE (he ended up being mild) 2 months ago. The NICU told me that Hope for HIE is a reputable organization if you want to check them out

 

[makesense114]

@akj They have Facebook pages as well, but I recommend caution when joining them because HIE is such a huge spectrum and you see the best and the worst cases there. Sometimes I’ll see posts that cause me to spiral a bit because the wait and see game of HIE is so terrible and I’m going through that with my son right now.

 

[nicolelovesjesus]

@snarf @thechongfam on Instagram has a little boy with HIE. I think many of their followers also have kids with HIE, so you might find some folks who’ve had similar experiences as you! For a while, we were in the Stem Cells for HIE Facebook group, as we were seeking stem cell therapy for my daughter with cerebral palsy. I’m sure many of those kids have severe HIE, as families are more likely to pursue expensive, experimental therapies if they’ve exhausted other options.

But it sounds as if your little man is making significant progress! Best of luck to you two

 

[katrina2017]

@snarf Our Rosie has pretty severe HIE. She is now 5 and the best thing that's ever happened to us. I'd be happy to chat with you, just reach out.

 

[sojchd]

@snarf I was caregiver for a child that was presumed to have severe HIE. He wasn’t crawling until well after his first birthday and had to have PT, ST, and OT. Eventual SMO’s. You would have no idea if you met him today at 3 years, almost 4 years old. Potty trained early, was super good at sign language and receptive language early on. He gets some speech therapy still but so do a lot of non-HIE kids. Good luck to you and your family.

 

[kishanugen]

@snarf 5 months in with our HIE wiggle worm. Our biggest problem so far is the reflex, which is just brutal. Glad to hear is doing great! I think Doctor’s are hesitant to give anything concrete as there is such a range of outcomes. I remember talking with our Nuero and her saying that two identical MRI readings can have very different outcomes.