*Deep breaths* So it’s only an Arnold-Chiari Type 1 malformation. It’s not a type 2 or 3, fortunately. But it means Charlie probably needs neurosurgery.
Neuro. Surgery.
Wow. The kid is only four.
I’m so glad I’m an observant mother. I noticed that just as Charlie fell asleep, he would exhale…then wait. After several moments, he would gasp in his air. The first time I brought it up to our pediatrician, he said, “As long as he’s not snoring, he should be fine.”
Um… oookay! Time for a second opinion.
Same pediatric group, but a different doctor, checked his tonsils and adenoids, and they were fine, so she sent us to a sleep specialist. *sigh* Good, getting somewhere.
A sleep study determined Central Sleep Apnea, but they didn’t know the cause. MRI time.
That’s what revealed the Chiari Malformation and where we are now.
So I’m reading up and according to National Institute of Neurological Disorders and Stroke, “It can be caused by structural defects in the brain and spinal cord that occur during fetal development, whether caused by genetic mutations or lack of proper vitamins or nutrients in the maternal diet.”
That actually makes a lot of sense. During my entire pregnancy with Charlie I was lactose intolerant. After he was born, I discovered my issues with gluten leading to self-diagnosis (long story about a lazy GI “specialist”) of celiac disease which would explain the weird lactose intolerance which seemed to disappear a few months after Charlie was born. I’d had a random bout of lactose intolerance before that vanished just as weirdly. I can’t remember if I brought up the lactose intolerance to my obstetrician. I’m pretty sure I did, but I’m going to contact them to find out.
Celiac disease is known for malabsorption of nutrients because it blunts the villi in the intestine where they are absorbed. I had no idea that I might have celiac disease when I was pregnant with either one of my boys.
*slumps shoulders* Bring on irrational guilt.
I know, it’s not my fault. It’s not like I drank alcohol or smoked. I took care of my body with the knowledge I had at the time. As rigorous as I am to sticking to a gluten-free diet, had I known then what I know now, part of me thinks that Charlie wouldn’t have this problem at all.
Oh, if time travel were truly possible! Circumstances like these are probably why we creative types dream of it. When I think of all the expensive prenatal vitamins that I took but probably did not absorb because I was also eating bread, I start to feel quite sick.
Ugh.
Well, at least we know what’s going on now, instead of when he’s a high school dropout at 16 because we couldn’t figure out why he couldn’t focus or even why he didn’t have the fine motor skills to write his name properly.
There’s definitely that.
Meanwhile, for the last day and a half since the first mention of the word “neurosurgery,” a kink in my own mental wiring thrust this blast from the past that I never have forgotten:
When Baby Piggy promises to practice neurosurgery on Kermie’s brain… yeah. It’s been stuck in my head ever since. I guess it’s my subconscious way of lightening my mood. 😉
Simply prayers, please.
Shea McIntosh Ford - Author, Harpist 