I'm in a Tunnel
Before I get started, I want to welcome all the new subscribers from my latest piece My Last Normal Day. It was shared by fellow Substack writer Luke O’Neil in his latest newsletter entitled I wait for the day I can sit in the sun again. He didn’t write the main essay in that one, but it’s quite good so check it out.
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Okay, I’ll shut up now. Enjoy.
“As you know, Emily’s MRI showed some abnormalities,” the neurology physician’s assistant says.
“What? No, we were told it was clear,” I say.
“Oh, I’m sorry,” she says with a grimace. “Well, we’ll go over it with Dr. M during our meeting in an hour or so. It was nice to meet you both.”
Stunned, I turn towards Allison. “What just happened?” I ask. She’s holding Em (short for Emily) in her arms and starts to cry. I hurry over and give them both a hug.
“It’s going to be okay,” I say.
I don’t know if I’m telling the truth.
Ten days ago Em had an MRI at Sutter Hospital in Santa Rosa when she was only five days old. The doctor there said it showed “no inflammation or other damage.” We were stunned then too, in a good way. She wasn’t breathing at birth and took a solid week to get to the point where she could breathe on her own. The doctors had been telling us some of her motor movements were slightly off, including her gag and suck reflexes. She was transferred to the Neonatal Intensive Care Unit (NICU) here at California Pacific Medical Center (CPMC) in San Francisco earlier today, ostensibly for a swallowing study.
This NICU is different from the one at Sutter where we’ve been for the past two weeks. It’s a large, wide-open room lined with isolettes containing other babies against the walls, yet it somehow feels claustrophobic. There are no walls or curtains because babies don’t require privacy. The only time you see a curtain is when a mom needs to breastfeed. Even the hand sanitizer smells different here. The nurses in Santa Rosa warned us that it would be more chaotic here and would take some getting used to. It feels more like we’re in a factory that churns out new humans than a hospital.
It doesn’t help that the assistant turned our world upside down. How was she not aware that we were told the MRI was clear? She dropped the ball harder than my nine-year-old stepdaughter Sara did when I tried to teach her how to juggle. We already have a meeting scheduled with Dr. M and the neurology team from Stanford in about an hour. We thought it would only be a formality, but now it’s going to be something much different. This is going to be a long hour.
“Why don’t you two grab lunch?” asks Em’s nurse in a tone that’s way too upbeat given what happened a few minutes ago. “There’s a great sandwich place across the street.”
How the hell are we supposed to eat after receiving that news? Who cares about how good a stupid sandwich tastes right now?!
“Will it affect her cognition at all?” I ask. I’m asking most of the questions since Allison is still in shock.
We’re in a dingy conference room with a large oval wooden table surrounded by a mismatched collection of old office chairs. Dr. M has been showing us the MRI images taken at Sutter. It’s the most terrifying Powerpoint presentation I’ve seen in my life—and I had a college professor who did one entirely in Comic Sans. I don’t know who interpreted these images originally, but they need to be fired. Any idiot could see the damage done to Em’s brain. It’s as clear as day—a bright white spot near her brain stem.
“No, the injury is only in her basal ganglia,” Dr. M says,” so it should have no effect on higher-order thought.”
The basal ganglia—the area of the brain primarily responsible for basic motor control. It’s a primitive part of the brain. A part of the brain that the vast majority of people don’t have to think about using.
“I should also note,” she continues, “we won’t fully know the effect of her brain injury on her motor movement development for quite a while. I’ve seen MRIs that look much worse than hers and then the kid grows up and you’d never know it. But I’ve also seen MRIs that don’t look as bad as Emily’s and they can’t walk.”
Her comment feels ambiguous. I want to go back to a time before we knew about her brain injury. Back to blissful ignorance. The gravity of Em’s condition feels more real now. The likelihood that she has cerebral palsy has gone from possible to almost certain, although it’s impossible to know the severity yet.
We leave the meeting in a daze and make our way back to the NICU. We don’t talk—both of our minds are racing with more questions than answers. Why is this happening to us? Is Em in pain? Will she be happy? Will she ever walk?
The nurse at the window buzzes us in and we wash our hands before walking to Em’s isolette. There’s a new nurse on shift. She seems less chipper and opinionated about sandwich spots, thankfully.
Allison and I stand on the side of Em’s isolette. I’m holding Allison’s hand while we both place our other hands on Em’s chest. I’m trying my best to savor this calm moment. If I ignore the feeding tube coming out of Em’s nose, she looks like a perfectly healthy baby. Only a week ago she was intubated and struggling to breathe. I stare at her sleeping, swaddled tightly in a blanket, her chest slowly rising and falling with each gentle breathe. Peaceful. She’s earned it after a tumultuous first two weeks of her life.
Rest baby girl. We have a long fight ahead of us.
“Is there any light at the end of the tunnel?”
When Em was born almost two and a half years ago we took an abrupt turn into this tunnel. This tunnel with no clear end in sight. We didn’t know we were in it at first. Not until that day at CPMC. That’s when I felt the darkness.
When people ask me that question it always stops me in my tracks. It’s hard not to wince when I hear it. I don’t blame people for asking; it’s a natural question to ask when someone is dealing with medical issues. I’ve probably asked it myself in the past.
We knew Em likely had cerebral palsy back when she was in the hospital, but she didn’t get an official diagnosis until she was almost a year old. Cerebral palsy is a life-long muscle movement disorder that could arise when the brain is deprived of blood and oxygen for a period of time—in her case, at birth. Because Em is young, we don’t know how severe it will be for her in the long run.
In her current state, it’s harder to think of things she can do than all the things she can’t do. She still can’t roll over on her side, crawl, sit up, stand, walk, talk, hold her own head up, hold objects in her hands, or swallow anything that’s more than a small amount of her own saliva. Her muscles alternate between being way too tight and way too loose, rarely just right. Most parents have long since celebrated their kid’s first steps and words by her age and their kids are starting to run around the house.
I want nothing more than to be out of this tunnel. This tunnel we’ve been stuck in for years now. We don’t know how long this tunnel is. Will it ever end?
It’s exhausting and frustrating to care for her. Her body is constantly moving throughout the day. Someone has to monitor her at all times in case she gets into a contorted position. Our days tend to run together—filled with tube feedings, Zoom therapy sessions, giving her medications, and listening to the same songs on repeat. I can only imagine how exhausting and frustrating it is for her. But she can’t communicate any of that to us. She yells out when she’s upset. Though the yells are hard to interpret. Is it because her body is twisting and she’s in pain? Is her diaper wet? Did she not like the song that just came on? She’s very particular about her music.
I know most of parenting a young kid is guesswork. Parenting Em is on a whole different level.
I have to keep reminding myself that she’s still very young. It’s not like she would be reciting Shakespeare at this age, even without cerebral palsy (and not only because her Dad doesn’t quite “get” Shakespeare). Yet there are moments where I see her emotions shine through—her smile when someone she recognizes enters the room, her laugh during her favorite song, her frown during a sad song, and her half-smile when I make a silly face that’s not quite funny enough for her (I call it her “courtesy” smile). Those are the moments when I know there’s a little person in her non-cooperative body. A person with opinions and feelings and a personality.
That’s the pinpoint of light at the end of the tunnel.
Thanks for reading all the way to the end, I appreciate it. No pressure, but it would really make my day/week/month if you subscribed.
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Hi Lyle, it was both insightful and scary to read your piece. We welcomed our son James at the beginning of January 2021 via a planned c-section at 38 weeks, he was a happy healthy baby for about 2 hours since he was born. Then when the nurse was checking his blood sugar, he was not breathing at that moment for a period of time. Doctors was able to resuscitate him, the story since that was very similar to your daughter, he was on breathing machine for the first two weeks, now with a feeding tube through the nose. Later after first MRI at day 4 and second MRI at day 14, drs told us he has a moderate brain damage to his basal ganglia and at his brain stem. and likely he'll have cerebral palsy and some cognitive impairment in the future. We are currently working on feeding in order to bring him home. We are trying to stay hopeful but terrified of the grim quality of life for him in the future. Your piece gave me a bit of what that future might look like. I just want to reach out to you and see if there's anything you wish you knew before that you want to share, that would be immensely helpful for us. Thanks.