Max’s Diagnosis

Three days. It took three days for the hospital to get Max in for his brain MRI. All the while, he had sedatives being pumped through his PICC line, only to keep him from clawing at his face trying to yank out the breathing tube he didn’t need. Once his MRI was over, and the anesthesia wore off, Max was extubated. The next morning, the wait was finally over. I held my baby boy again on January 23rd at 4:49 AM for the first time in 66 hours.

It will forever be one of the most cherished moments in my life.

And I wish I could say things only improved from there, but sadly that was not the case.  Max was a complicated little guy, and it took three weeks for the specialists to figure out the breadth of his condition. But the MRI results were what we had been waiting on. They would help tell us the full scope of Max’s condition. Though when they came back, we had to wait another two days for a meeting with his specialists.

I had 48 hours to prepare all of my questions. I had done as much research as I could. I even thought through scenarios where the doctors gave certain answers, so I could ask more questions after that. I had a huge flow chart of possibilities all leading down different roads, and I had imagined life with each one. With a heavy heart, I realized none of them ended the way I truly wanted. It was impossible. Max had something I couldn’t fix. God was sending us down a path from which I wanted to turn and run. But as the hours until the meeting slipped away, I put on a brave face and accepted our fate. The irony of the matter was that it’s never the hard life that actually kills you. In the end, it’s always that little sliver of hope that plunges the dagger and twists.

After I traded my stained sweats for a clean black dress, my messy curls for a taut ponytail, and my dark circles for contour and sharp-edged liner, I knew I had a chance to be taken seriously. Because let’s face it, doctors don’t give their undivided attention to a young, sleep-deprived, unkept mother, and even if you do everything you can to step above your stereotype, sometimes you’ve already been categorized and filed away, doomed before you even walk through the door. So, I took my mom with me for good measure. To be honest, I thought I was ready, I thought if I looked the part, I could be the part. At the time, I couldn’t even imagine how wrong I was.

The specialists introduced themselves as a curtesy to my mom. I had already met with most of them, usually at every odd and end on the clock, and usually at the expense of my dignity. Sleeping, snoring, applying deodorant, stuffing my face after forgetting to eat for 24 hours. You name it, they saw it. Endocrinologists, geneticists, neonatalogists, neurologists, neurosurgeons, ophthalmologists, physician’s assistants, medical students, etc., a whole spectrum of specialties across the medical field all in one room. It was quite intimidating. In a room full of licensed physicians, you tend to feel somewhat inadequate, small. But I held my head high, and reminded myself that I am a straight-A biology major, I could keep pace with these doctors. They had all mentioned it to me before, how well versed I was. It had even rubbed off on my family, and doctors always asked us if we were in the medical field. And besides, I was armed with my 5-inch binder full of Max’s medical history, the extensive research I had done, and my flow-chart of questions, all of which I had worked on so tirelessly.

But the neurology team was insisting on going first, not because they had the most to offer (they did) or because their field was the main focus of the meeting (it was), but they had clinicals they needed to get to, and had to leave soon. After they had already gotten there late. My face must have showed everything I was thinking (inappropriate, even for a personal blog) because the social worker who had coordinated the whole thing quickly followed up with blame on my part. I was pushing for the discussion amongst all the teams, I wanted it done as soon as possible, everyone has conflicting schedules, this was the best I was going to get. As I was nodding, squashing the irritation rising like bile in my throat, the neurologist brought the computer screen to life, and pulled up Max’s brain MRI.

All of my irritation dispersed, and I was once again petrified and small and too inadequate to carry the worry hanging on my dress, my arms, my legs. It was pulling me backwards, back into the whirlwind that is my anxiety, pushing me further into the cushions of the upholstered chair I had claimed at the head of the room. I thought by doing so it would give me some unseen strength, an upper-hand. But to what? I don’t know. To the diagnosis? To the possibilities that would be laid out before me? To the doctors? Like this was some battle, that I had to calculate, and strategize, and then fight my way out of?

She explained the report detailing the structure of his brain.

Optic nerve hypoplasia. Partial agenesis of the corpus callosum. Abnormalities in the cavum septum pellucidum and pituitary gland. Underdevelopment of the white cortical matter in the brain. Arachnoid cysts in the parietal and temporal lobes.

I understood the terminology, though it was strange. It was always strange…how the doctors talked about Max. Using articles like ‘the’ instead of pronouns like ‘his.’ I guess it’s too personal that way. To identify with a patient as actually being a person. I guess it’s easier for them, to tell a hopeful, and yet at the same time, sorrowful, mother that she placed her hope in the wrong basket, if her baby has a number instead of a name. Because how could she be happy if the winning numbers weren’t hers? But somehow, she still felt like she won the universe in the form of a child, while at the same time, feeling that as long as the world kept turning, and life kept moving, the closer she got to knowing life would never be simple, cursed with an endless cycle of yearning for a different outcome for her baby, for the life she had planned out for him in her head.

Because everything for which we’d been praying…was gone in just under a minute. Now, even worse than we had originally expected. Our neurosurgeon, the one who said we could wait and see and shoot for the best, shifted slightly, and my subconscious jumped at the opportunity to redirect the anger anywhere but inside my chest. He said it was okay to hope, he said it was okay to aim for the best possible outcome, and where the hell did that advice get me? Nowhere.

Septo-Optic Dysplasia. That was the official diagnosis.

Truly though? It wasn’t that moment that sliced me through from neck to naval. It was when she showed me the actual image. I’ve seen brain MRI’s, in school and in the science articles I like to read in my spare time. I know what they should look like.

His was not what it should look like.

Large areas of brain tissue were missing, and the empty space was filled with fluid. That was the fluid in all the ultrasound images. Hydrocephalus, yes, but also no. It wasn’t causing pressure like we thought, it was just taking the space of what wasn’t there. It was almost worse than hearing he would need surgery to drain the fluid. All this time I thought there was pressure being put on his brain, potentially causing brain damage. Come to find out, there was no pressure at all, there wasn’t even an excess of fluid. The fluid was sustaining itself in just the right amount. It was the brain tissue that was the problem. There just wasn’t enough of it in the first place.

I almost gagged. I couldn’t help it. I was stunned to the point of vomiting. Once again, my life flipped from one reality to the next. Changing course, altering the little future I had planned in my mind. I thought I could prepare myself. That’s whole reason why I planned. So that when the truth hit me, even if it was the worst case scenario, I could keep my pace. But how do you keep running when they take your legs from you? My whole binder, it was useless. It was the falter in my stride that I never accounted for. I never thought to factor in the unexpected.

I didn’t say anything. Not because I didn’t have anything to add, or any questions to ask, but because I knew if I tried to speak, I would cry. Not just a tear or two that I could brush away, but the deep, heaving, hyperventilating, unable to catch your breath to the point of passing out type of sobbing.

So I was silent, but silence is such an interesting thing. Because it is most definitely not synonymous with quietness. Silence is loud, booming, even. Especially when you’re supposed to say something. Anything. But every time I would start to form a sentence, the building anguish would strangle it off. Demanding me to open that black box I’d been ignoring for too long, insisting on punishing me with an audience for keeping it at bay.

And those damn stares. I knew they were used to having to hide them. They think if they’re careful enough, then mothers like me wouldn’t notice. Lowering their heads just a fraction of a degree, looking up from beneath their eyebrows for just an instant before darting their eyes away, giving mothers their moment to either give into their grief or tuck it away for the next second alone. I hated it. I hated them. I hated them all. I hated that they could see me this way. Struggling to keep my composure. Struggling to keep my knees locked, my feet steadied beneath me so that I didn’t sway to the tempo of my sorrow. Though I couldn’t manage it. I slowly made my way across the room, and back to my chair. Carefully lowering myself back into the stiff hospital furniture.

All eyes were waiting. Waiting to look back at me, waiting to spot a tear or a brave face, waiting for me to do something. I couldn’t. I couldn’t do anything. I couldn’t tip the scale either way. So, I held my breath instead.

My mom and the geneticist chimed in, asking a few questions to give me time to decide if I would give in to my moment.

I bit my lip. I bit it hard. I bit it until I tasted blood, and then I bit it harder. The tears pooled along the waterline of my eyes, and dried up once the physical pain turned into a dull thud in my mouth. The flood was gone for now, but it was just waiting in the wings, threatening to burst through at any moment.

All of this happened in a matter of seconds. Then, I finally built up the courage to ask for the prognosis.

All children are affected differently. Function doesn’t always follow structure, especially in cases like these. Two structurally similar MRI scans from two different individuals could result in two different outcomes on either end of the spectrum.

And that spectrum?

In the best case scenario, he could be only slightly affected, having mild cognitive and developmental delays and visual impairment. He could be like any other child.

And in the worst case scenario?

In the worst case scenario, he could be mentally handicapped, physically disabled, and blind. His life would be hard.

I couldn’t talk after that. I couldn’t ask anymore questions. I nodded my head for the last five minutes of the meeting. Once they saw I couldn’t take anymore, they dismissed themselves.

Then I looked to my mom, and I took my moment.

 

 

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