I follow a blog about a little girl named Sophie who has HIE. She is a success story, and one that I hope we can mimic as well in the months and years to come.
I was looking through some of the blog’s links, when I found this, a chart explaining each grade of HIE.
Looking at this chart, though, I have many questions.
On the pdf file that this chart is from, it doesn’t say when the doctors would apply this to a baby, however I am assuming that it is a prognosis they make within the first few days of life. In that case, I can definitely see why they diagnosed Noah with Grade III.
– When Noah was first shipped off to the Stollery, he was put on 3 different anti-seizure meds, which basically acted like a strong sedative. I describe it as “rag doll baby”. He was essentially in a coma-like state 24/7. He didn’t open his eyes, didn’t react to stimulus, didn’t cry, didn’t make any noise, nothing.
– When he was in that state, you could lift his arm or leg and it would just flop right back down, he had no muscle tone or resistance in movement at all.
Failure to maintain spontaneous respiration:
– At birth, he was put on a CPAP and then oxygen prongs, up until he was de-tubed. Initially, he had holes in his lungs that developed due to the bag used to resuscitate him. His lungs healed themselves quickly, but he was put on the oxygen prongs since they told us that he was breathing room air, but not often enough.
Prolonged fits that are difficult to control:
– At 1 day of life, he started having apnea episodes that accompanied eye twitching and raised arms, which we later found out were seizures. At 36 hours he suffered a severe seizure, which was the domino that sent us to the Stollery. Once there, they told us that the only brain activity he had was his seizures, and the EEG showed exclusively burst-suppression patterns, which is very severe and very bad.
Once we took Noah off his life support (on Christmas Eve, at 5 days old), he started showing signs of improvement. Reading through the symptoms of HIE II (they told us while we were being discharged that he may have Grade II instead), I can see the difference.
– Once his meds started to wear off, Noah become steadily more awake. It started with only one eye open, then both, only low light, then full light. That was all while we were still in the hospital.
– He started developing some reflexes, again once the meds started to wear off.
– He didn’t cry until about a week after we got home.
Marked abnormalities in tone:
– He started off as hypotonic, but in the last few months he’s gotten a lot stiffer. I see this as both a good and a bad sign. Personally, I prefer stiffer joints than the looser ones with no muscle control. But OT/PT have noticed that the stiffness in his arms could be what’s preventing him from bringing things to his mouth (although he does bring his fist to his mouth occasionally).
Requires tube feeds:
– Initially, yes, he was tube fed. However, after his tackle was removed, he hasn’t been tube fed since.
Fits easily controlled:
– Noah hasn’t had any seizure activity since we took him off his life support on Christmas Eve.
Recovering by 7 days:
– We took him off his meds at 5 days old, and he was showing a marked improvement by 7 days old. However, I’m not sure if this point is based on being medicated or not (i.e. does it mean it’s based on spontaneous or assisted recovery? Because we were obviously assisted by the anti-seizure meds and the unintended 3 day dehydration).
Now, Grade I. I am most interested by this column, because Grade I has never been mentioned to us. We were told that Noah was the severest of the severe, and the whole “he will never walk/talk/eat” spiel.
Irritable and “hyper-alert”:
– Noah is actually a very easy-going baby (disregarding the last week where he hasn’t napped at all…), so I’m waiting for the verdict on this one once he gets a bit older, and once he can communicate with us more (i.e. when he can talk).
– I don’t actually know the normal level of tone that a baby’s supposed to have…..I have a playdate next week with a mom and her baby who is a few days younger than Noah, maybe I’ll ask to hold her baby and I can compare.
– I’m wondering if this relates to the muscles in the neck too? In that case, I again don’t know what’s considered “normal” tone, but his head control needs work, still.
– Perhaps most intriguing of all was when Noah suddenly developed a very weak suck at 8 days old, which prompted us to start him on a bottle. Since then his suck has developed to a very strong one…..seriously, try feeding him and he’ll prove it to you! 😛
– Noah hasn’t had any seizure activity since we took him off his life support.
Recovering by 48 hours:
– As far as we know, no.
So the weird thing is that he seems to be all over that chart. The burning question is then, what grade is he?* hypotonia = very loose, hypertonia = very stiff