This is kind of gruesome and maybe a depressing post. But for people who are interested in grody medical stuff--I am very much so and always have been--or for people who have kids with the same kind of medical problems as my daughter it might be interesting.
Did I ever circle back around and say my daughter was diagnosed with autism? She was. It wasn't that shocking. I've been saying it since she's been born, "That girl has autism," and all the symptoms were there. She's six, so what might be shocking is that we've never had a diagnosis before. But we didn't. Why would we? Our daughter was already being treated in the same way she would have been if she had had autism anyway--physical, occupational, speech, vision therapy.
Like I said in a previous post, it didn't make any difference to us, the label--or we thought it didn't. To our minds, it was just like, "Okay, doctors, so you tell us she doesn't have "autism." She just has a collection of autistic-like symptoms--lack of eye contact, sensory integration probs, motor probs, seizures, etc.--that derive from physical problems that make her present EXACTLY AS IF SHE HAS AUTISM.
So for instance:
1. Her lack of eye contact came from having a damaged optical nerve, and from having gaze apraxia, which is the inability (without much thought and effort) to direct your gaze on something. The doctor who diagnosed her with gaze apraxia said that he often refers to gaze apraxia as "visual autism" because there's no way for people who have it to visually connect with others b/c their eyes can't land on them for any length of time.
2. Her sensory integration problems came from an IVH (interventricular hemmorhage) when she was born. It happened because the ventricles in her brain were too little and weak so they burst and blood flooded into the grey matter in her brain and blood damages everything it touches. Blood is not a brain's friend. The bleed could have kept going and damaging the whole thing but the bleed resolved itself. Still, once it happens, you can't reverse the damage.
3. The problems with her gait came from PVL (a hardening of the gray matter of the brain, which happens after IVH).. her PVL affected her motor strip in particular.
4. The seizures were from hydrocephalus, which developed after the IVH. Hydrocephalus happened in my daughters's case because her brain drainage system got all clogged up from dried blood and then the spinal fluid couldn't travel up and down, from her brain, down the spinal column and back up.
If this goes on for a long time (without putting in a shunt, a man-made reservoir, a little tube that carries the spinal fluid out of the brain and deposits it into a pocket in the abdomen), the ventricles keep getting bigger and bigger, and the more big they get, the less brain you have to work with, because it's basically just these two giant pockets of fluid taking up all the real estate.
So my daughter has a shunt. It's called a VP shunt, and it's a little square gauge on top of her head. You can feel it under her skin. It feels like she has a little lego piece under there. The gauge is magnetic, so it can be adjusted from the outside. It's sort of a new development, the magnetic part of the shut. With the magnetic gauges, the doctors can put this little square thing on the outside over the gauge and then turn a knob and adjust the shunt--to allow for more flow or less. Pretty great idea. Before, if shunts needed to be adjusted they had to do brain surgery.
The end of the shunt is like a telephone cord, all coiled up. As kids grow, the cord uncoils and uncoils and then if it gets too short, they do a tiny surgery on the stomach and just attach more coiled up cord to it.
The problem with putting shunts in is a lot of the time, they get infected. You have to do the surgery carefully (for obvious reasons), but the longer you leave the brain open, the more susceptible it is to germs, and the more susceptible the shunt is for getting germs on it. When I asked the doctor how they can prevent germs getting in there or on the shunt, he said, it's basically "witch-doctoring." Every brain surgeon has his or her own superstitions and little rituals he or she does based on completely unfounded ideas and opinions. Some keep the shunt covered until they need it, some don't cover it for fear germs will be on the cloth, some keep the room really cold, on and on.
It's interesting when doctors tell you how little they know and how they're just winging it when they're doing stuff like, say, cutting your brain open and putting a foreign object in it. This is the same doctor who told me, "We almost know nothing about the brain. We know there's a hard bone around it and it has ridges. That about wraps it up." He said, "We go in and put in shunts to drain fluid off. And we cut brains in half so seizures stop, though we don't know why that makes them stop. And we cut out masses of cancer. That's about it. That's all we can do, given what we know."
It occurred to me that it's kind of funny. Everybody says, "This isn't brain surgery," but they should probably say, "This isn't heart surgery." Heart surgeons are incredible mechanics. We know a lot about the heart and so there's a lot of very intricate fixing that needs to be done. You don't just cut a portion of it out or cut it in half or stick a straw or plug in it.
Oh, so anyway, the doctor told me, very matter of factly, that my daughter may have to have several shunt revisions. I said, "Like how many?" He said, "Maybe none, maybe a lot." I said, "Like what's a lot? What do you mean a lot? Like twenty?"
"Maybe," he nodded. "Or more."
"What do you mean more, like hundreds or something?"
He shrugged, "Possibly."
I walked away and I said to my husband, "Doctors are so full of SHIT! They always tell you the worst case scenarios but who's had a hundred surgeries? Have you ever ever EVER in your entire life heard of someone having a hundred surgeries?"
Later that day, I talked to my friend Rachel in the NICU parent's lounge. Long story but my husband knew Rachel's husband and their baby just happeend to be in the NICU with ours--her baby and my babies were incubator neighbors--and so Rachel and I got to be really close because we saw each other 24-7 for months and her son had an IVH too.
So anyway, we were talking and I said, "So are you southern or something?" Her accent didn't really sound southern. But she had this accent that was super cute and drawly.
She smiled and was like, "No. I think it's from hanging out with my sister all the time who's deaf."
I was like, "Oh, really. Was she born deaf?"
She was like, "No, my mom had shunts put in her ears so her ears could drain when she was little." [I guess sometimes little kids have trouble with ear infections because their tubes are so little and sometimes the parents get nervous that the kids might not develop speech because they can't ever hear because their ears are always infected, so instead of waiting until the tubes get bigger, they put in shunts.]
And Rachel was like, "But the shunts just kept getting infected and infected and infected, and her body kept rejecting them, and she kept having to have surgeries."
I was like, "Really, like how many?"
"I don't know. Like probably a hundred or more?" Rachel said. "Then she finally went deaf. And now she's in her thirties, but she has brain cancer from getting cancer in her ear and the cancer spreading from her ear to her brain."
I must have looked horrified because Rachel backed up, looking terribly sorry, like, "But that never happens! It's like so SO rare!!!"
I talked to Rachel about this very conversation three years ago, and we were laughing because Rachel was like, "I was so brain dead during that time. Why the HELL would I ever tell you that story? WHY THE HELL WOULD I EVER TELL YOU THAT?" I was like, "I'm kind of glad you did. I thought that neurosurgeon was a lunatic."
BTW, my daughter's only had one shunt revision. Her shunt, the gauge part, about four years ago, shifted because her head was growing. So the doc just realigned it, and while he was in there digging around, he switched it out with a new and improved.
Oh, wait, I thought this was really fascinating. This guy had a shunt, and it malfunctioned but it wasn't like it was a total blockage. It was a slow, slow build up of fluid over time and when they did an MRI or whatever, they found the guy was basically functioning normally but had NO BRAIN LEFT. Like he just had the smallest rim of a a brain. The rest was filled with fluid. But he functioned normally. Had a job. Just under average IQ.
Anyway, so what's my point? Oh, my daughter has autism. We had the diagnosis for insurance and school purposes.
And once she got diagnosed, and we had a name--once we heard the words "Autism" and saw it on paper "Amira Abed, autistic spectrum"--this huge paradigm shift happened. I was really really mad at her for a week after that. Every time she would be doing the annoying stuff that she always does, I'd be thinking, "Stop being so autistic, God! You are SO AUTISTIC, you are driving me insane. I cannot stand living with an AUTISTIC PERSON! Why do have this AUTISTIC child who is so weird and does all this weird stuff and never listens to me or anything I say and won't follow any directions because she does not care about me whatsoever!!! Don't come up to hug me. I could be a wire monkey for all you care. I know this hug is for you, not for me. You know why I know? BECAUSE YOU'RE AUTISTIC AND THAT"S HOW YOU AUTISTIC PEOPLE ARE! Huff!"
My husband and I were like, "Is it just us? Is she acting MORE autistic now that we have this diagnosis? She just seems so much more autistic now."
Of course it IS just us. Language is so powerful. One word can really change the way you think. This is good news. It was bad news for us then, but it's so great to confirm that words can punch people in the brain SO HARD. They work like that. We are in the right field! When I write something, it's possible my writing might do something to someone at some point.
So anyway, my husband and I were super bummed for a week. We weren't even talking. It hit us so much harder than we thought it would. We would just sit in the car, staring straight ahead at nothing. It was just understood. "We are so sad right now. We can't even talk about this shit."
But now it's a relief. Because before, she'd do some weird stuff at a restaurant, and my husband would be like, "Oh, I'm really sorry, she's uh . . . special." And I would look at him, all squinched up like, Don't say... 'special!' I hate when people say 'special!'" But what could you say? There wasn't any neat way to wrap it up. No easy medical term you could rattle off to a waiter. But now there is.
Now we can just be like, "Sorry she just spit on your floor, dude. Autistic. Know what I mean? I think you do."