‘I’m Here—You’re OK’
Our family was hiking in Hawaii when my son had a terrifying seizure. The next day we learned what caused it, and what he still had to face.
Nadya Sagner and her son, Charlie. Photo by Skip Brown
I told off my son’s neurosurgeon. I’m not usually a confrontational person. I’m nervous around people with knowledge that far surpasses mine, especially when it comes to things like advanced math or science. I needed this doctor to perform brain surgery on my 14-year-old son, Charlie, but so far the man had come off as brusque, stern and dismissive. Charlie was terrified of everything from his medical jargon to his death-grip handshake. But this was the surgeon we’d been assigned, and he happened to be the one everyone had recommended.
It was late last August, day three of our stay on the neurology floor at Children’s National hospital in D.C. I had barely slept, having just rolled out of the convertible vinyl couch-bed in Charlie’s room. He was heavily medicated and hooked up to an electroencephalogram (EEG) that was monitoring the electrical activity in his brain. And here was that surgeon, breezing toward us. I didn’t want Charlie to wake up and panic, so I stopped the surgeon as he walked into the room and rushed him back into the hallway.
“I know you’re brilliant,” I told him. I explained that he had scared Charlie with all the talk about what could happen during surgery, how he could end up with weakness on his left side or damage to his motor cortex. “Tell me the scary parts, I can handle it,” I said. “But don’t tell him. He doesn’t need to hear it right now. You have to be more gentle.”
Looking back, I’m embarrassed that I said any of this. Blame it on fear, exhaustion or adrenaline, but I had to stand up for my kid. Normally, Charlie’s not easily rattled. He’s polite and respectful, and he’s also got a sarcastic side. So far he’d handled this whole experience—the world of hospitals was completely new to us—with patience and even amusement. But the idea that he was having brain surgery was too much for him, and something in me was triggered. Maybe it was the eloquence of my maternal plea, or my obvious desperation. Maybe the surgeon was just eager to move on with his morning rounds or get away from the crazy emotional mother. Whatever the reason, he listened.
The writer was visiting Waimea Canyon (seen here) in Hawaii last summer when her son, Charlie, pictured with his sister, Tessa, had a seizure. Photos courtesy of Nadya Sagner
A few weeks earlier we were on the island of Kauai with my extended family. My parents were treating us to a Hawaiian vacation to celebrate some family milestones. My brother and his family came, too. At Poipu Beach, we all lounged together under windblown umbrellas. My 10-year-old daughter, Tessa, snorkeled blissfully, spying on sea turtles and tropical fish. Back at our rental house, my husband, RP, and I drifted happily in the pool. He was about to switch law firms; I was taking a break from my work as a freelance writer, editor and art consultant. We’d made plans to explore the rest of the island; my dad booked reservations for a boat tour of the Na Pali Coast later in the week. At dinner, my mom did her usual corny toast to everyone’s health.
We felt lucky and grateful, the way people feel when their luck hasn’t really been challenged yet. Our life was good. We felt settled in Bethesda. The kids were happy: Tessa, who loves writing and art, was about to start fifth grade at Chevy Chase Elementary School, and Charlie—my sweet, cynical firstborn—was excited for his freshman year at Walt Whitman High School. He was going straight into a second-year photography class and couldn’t wait to hone his skills. He’d just spent a month at summer camp in Maine, and afterward we rented a house on a nearby lake. Kauai was a vacation on top of a vacation.
The third morning of our trip we took a long drive to Waimea Canyon on the western side of the island. The scenery was lush and spectacular, with a waterfall visible across the canyon. Charlie and RP took some photos. The kids and I walked a bit ahead of the others and found a wide rock ledge overlooking the canyon. I exclaimed at the view; Tessa needed a hand, and Charlie bent over to pull her up. Out of nowhere, his left arm twisted at a weird angle. Then his whole body contorted in a way that was distinctly off. I asked him if something was wrong, my voice suddenly sharp. Seconds later he was twisting more and falling to the ground, and somehow I was half under and half behind him, and RP was asking, “Is he having a seizure?” and I was saying, “He’s having a seizure.”
The blood drained from Charlie’s face, and his cheeks turned white. I held him as his body convulsed, and I kept repeating the words “I’m here” and “you’re OK” to reassure myself as much as Charlie. He kicked off one of his sneakers. His eyes moved back and forth, unseeing. We were about 10 feet away from a cliff, we had no cell service, and Charlie was convulsing on the ground. It was like a cliché of someone having a seizure. Then the seizure stopped. Maybe five minutes had passed.
We got him to sit up. He was exhausted and had no idea why was he sitting on the ground, with me behind him, the whole family peering down at him anxiously. It was brutally hot. My brother ran to the car to get some water and an umbrella for shade. RP asked Charlie if he knew who was president, and he answered, “Unfortunately.” He stood up, and we walked him back to the car, alarmed but relieved that he knew who he was. He was walking fine. He could answer questions about cameras and cars, his dual obsessions. He seemed intact.
We knew we had to get him checked out. He’d never had a seizure before; he’d never had more than a headache. There was a local hospital just down the road. We figured a doctor would recommend a quiet day or two relaxing at the pool. We’d probably still make the boat tour on Friday.
At Kauai Veterans Memorial Hospital, a nurse checked us in and Charlie was seen right away. The ER doctor was a mild-mannered, friendly guy with a shock of gray hair—Charlie nicknamed him “Henry Winkler.” Seeing Charlie in a hospital bed was disconcerting, but he seemed like himself, just tired. Orderlies wheeled him down the hall for a CT scan. We were all joking around. I felt relaxed enough to step outside and return a few calls and emails.
When I came back, the doctor was standing with RP in front of a computer monitor in the hallway outside of Charlie’s hospital room. I could see my son’s CT image on the screen. There was a blotch on the right side of his brain. The doctor actually said the words, “I have bad news.” My knees buckled.
RP gripped my hand. The doctor said it was some kind of mass or malformation. Charlie would have to be medevaced to Honolulu. Only one parent could go with him because the plane had strict weight limits. We agreed that I would go, despite my fear of small planes, because of course you want your mom when you’re sick or injured or scared. Charlie seemed calm—perhaps because he’d been given Ativan, but probably because he’s just so laid-back. (A year earlier, when he’d gouged his leg to the bone roughhousing with his cousin, he didn’t flinch as the ER doctor stitched him up. I couldn’t even look.) If he had been upset this time, I don’t know what we would have done.
Hours must have passed. The air transport guys had to get to the airport in Honolulu, fly to Kauai, and drive across the island to Waimea. They finally arrived in a flurry of activity, and I can’t overstate how kind and wise these men were. They loaded Charlie onto the ambulance for the ride to the airport, and I climbed in behind him. Their names were Peter and Paul: Hawaiian saints, even to our family of non-Catholics. We chatted about sushi and the TV show Stranger Things. Peter had spent a few years in D.C. as a kid; Paul wore Crocs and was a single dad. I felt a little bit like a person again, even in the midst of worry and confusion.
Early the next morning, a team at the hospital in Honolulu came to get Charlie for an angiogram, a diagnostic test in which a tiny tube would be threaded to his brain to check for a certain kind of malformation. He was medicated and feeling relaxed, even giddy; he even made me take a photo of him posing as E.T. with finger aglow. Once he was taken in, I cried in a deserted waiting room.
After the procedure, a doctor told me that he’d ruled out one diagnosis but still didn’t know what it could be—and he mumbled something about a neoplasm, which Google told me is a synonym for tumor. I immediately regretted Googling. It was like my thoughts had a wall that said “brain tumor,” and I couldn’t get past that wall. I knew exactly what I was afraid of, and I refused to picture it. Charlie was Charlie, unscathed, and I couldn’t picture him otherwise. It feels wrong to write it even now, like I’m jinxing the future.
Charlie, a freshman at Walt Whitman High School, underwent surgery in September to remove a benign malformation in his brain. Photo by Skip Brown
Bargaining is one of the classic early stages of grief. I didn’t know what I was grieving over yet, but I made some promises to myself and didn’t tell anyone about them. I would try to be a better person, less judgmental, less materialistic. Nothing mattered except Charlie being OK.
RP arrived in Honolulu just in time for Charlie’s MRI. It was comforting to see him, though he looked as frightened as I felt. Late that afternoon, RP and I were called into a conference room, where a group of doctors surrounded us. Charlie’s scans were blown up on a screen. I saw the same mass I’d seen at the other hospital. Finally, a diagnosis: a cavernous venous malformation, or CVM. A clump of badly formed veins and capillaries. Likely congenital. (I still can’t bear to think of tiny Charlie with a mass of messed-up veins in his brain since birth.) Treatable with surgery or medication. Not cancer.
Not cancer. I’m sure I cried. While we were enormously relieved, we were also horrified that Charlie likely needed surgery. Could we just put him on medication instead? What would happen in the meantime? We were in the middle of the Pacific Ocean and wanted to go home. Was flying safe? Would he have another seizure? What about the months ahead, and the rest of his life?
The doctors said they’d watch him for a few days, but we really didn’t know how long that would be. Everything in hospitals takes forever. In the moment, when you’re there, everything is vivid and specific, but eventually it all fades into “hospital time.” I think it’s a blessing that my memories of those days are muddled. I do recall the nurses, each one cuter and bubblier than the last. I know the cafeteria served poke and Spam musubi. I remember that it was our 20th wedding anniversary, and we spent it huddled in an overly air-conditioned hospital room.
They didn’t want us to leave until they were sure that Charlie wouldn’t have another seizure. Neurologists seemed confident that we could manage things with medication; a surgeon unequivocally recommended surgery. We could only wait. Meanwhile, Charlie was fine: bored and a little worn out, but his regular charming self.
It felt necessary, urgent even, to tell our friends what was going on. Facebook seemed inappropriate, so RP and I reached out in our own separate ways. I composed a simple text to send to various people, and sent separate notes to friends of friends—pediatricians, radiologists or other doctors who might know something that could help. Everyone wrote back quickly, with notes like, “We love you—it will be OK.”
After three days in the hospital, Charlie was finally discharged. The doctors said he was stable and it was safe to fly home, and we promised to follow up as soon as we landed. We had to stay another night in Honolulu, close to the hospital in case he had another seizure. At the hotel, I took my first shower in four days, then stood outside the bathroom door listening, terrified, while Charlie showered.
We were in the air for 7½ hours to Dallas, then another three to Baltimore. Doctors had warned us that if Charlie had a seizure on the plane while flying over the Pacific—they didn’t think he would—we’d have to convince the crew to turn back to Hawaii or land at the nearest airport once we reached the West Coast. I don’t know how I didn’t have a panic attack.
Once we got home, we must have gone to Children’s six or seven times for office visits, tests and bloodwork, all of it culminating in brain surgery. Everyone knew us as “the Hawaii family.” The nurses were truly helpful, always there with a tissue or a blanket. Whenever Charlie had to stay overnight, I slept there, too, and the nurses cared for both of us. The neurology team put Charlie on a 48-hour EEG to see if the CVM was causing any problematic brain activity. The machine itself was incredibly unwieldy—a combination of cords and a monitor, with a mesh cap that covered the electrodes all over his head—but he was good-natured about it, trailing the whole goofy apparatus each time he wanted to get out of bed.
There were small compensations: I let Charlie watch an inappropriate movie, Superbad, on his laptop and brought him candy on demand from the seventh-floor café. Darrell, the technician who set up the EEG, indulged in a cathartic Trump-bashing session with us. My parents flew up from Florida. Our friends kept checking in and sending gifts. It was during this stay at Children’s in August that I confronted the neurosurgeon—or whatever it was that I did.
It didn’t take long to realize that we were lucky to have access to this surgeon, no matter how intimidating he was. Charlie’s malformation was causing continual subclinical seizures: invisible but abnormal brain activity that was nonetheless dangerous. He could have another major seizure and hurt himself. His brain could bleed. The malformation could rupture. He needed surgery—soon. It was hard to imagine that anyone, regardless of his credentials, would be slicing into our child’s skull. But as time went on, RP and I thought about what Charlie’s life would be like if the CVM wasn’t removed. He’d have to stay on high doses of anti-seizure medications. He couldn’t ride his bike, climb at Earth Treks, or even take PE class at school. He could only swim next to a lifeguard. Flights would be stressful. Travel outside the country would be nearly impossible. He might not be allowed to drive. I probably wouldn’t want to let him out of my sight.
We were actually lucky that Charlie’s CVM was operable. Doctors told us that many of these rare malformations are too small, too deeply situated in the brain, or too close to the brain stem. They produce few warning signs, especially in young people. In Charlie’s case, he’d noticed a very slight hand tremor off and on for about 18 months before his seizure, but I didn’t think much of it, and our pediatrician dismissed it, as well. Some CVMs are thought to be genetic—and these tend to occur in multiples in the same person. Charlie had only one, near the surface of his brain next to the right motor cortex, and it was cleanly defined. His head wouldn’t even need to be shaved. He’d miss maybe 10 days of school. A date was set: Sept. 12, 2017.
I’d been taking notes on my iPhone, keeping an informal journal that helped me process as well as remember, but I didn’t type much during that last hospital stay at Children’s. I do recall the surgical board in the waiting room, where patient IDs are posted like numbers at the MVA. The surgery waiting room is a sad, spooky place. Nobody talks to each other, but there’s an unspoken acknowledgement of our shared worry. As we waited for Charlie to come out of surgery, Tessa watched The Martian on her iPad. RP paced the hallways. I flipped through a magazine without really reading it. After four or five hours, our doctor came out and told us that the surgery was over and Charlie was fine. The entire malformation had been removed. The surgeon said it was bigger than a golf ball, the largest CVM he’d ever seen. He hugged us—a warm and unexpected gesture from the man who’d scared us all.
We saw Charlie in the intensive care unit about 30 minutes later. He was still coming off the anesthesia, a little loopy but reassuringly himself, thanking the nurses and rattling off quotes from The Simpsons. We had to stay a few more days, and those days were some of the hardest. Now that the CVM was out of Charlie’s brain, we could finally let down our guard and admit how scared we’d been. Since Charlie knew he was out of real danger, he allowed himself to complain. He was bored. The bed was too short. He missed his friends. He even missed school—the start of his freshman year had been totally disrupted. His head hurt, badly. It’s awful to see your kid in pain, even when it’s pain from healing.
“You have to make the universe right again.” That’s what my dad said when I told him that we were buying Charlie a Hasselblad camera he’d been wanting. We didn’t want to spoil him, but he’d gone through something scary and unfair, and handled it with humor and grace. It’s just an object, yet it made him so happy. It was a reminder of who he was and what he cared about, that he wasn’t just a kid in a hospital with a brain malformation.
Over and over again, I was reminded of how much worse things could have been. So many kids at Children’s were much sicker. Charlie’s seizure could have happened at camp, when we weren’t with him, or he could have injured himself when he fell. His CVM was operable. We had excellent health insurance and never had to worry about paying for his treatment. I know I speak from a place of incredible privilege.
One lesson I learned: It’s never wrong to reach out to someone at a time of uncertainty. I was grateful for the calls, texts and gifts, no matter how silly. Did you know that get-well potatoes are a thing? Charlie’s cousins sent one: a single Idaho potato with a message written in Sharpie on one side. One friend filled our fridge with Trader Joe’s favorites so we’d have food as soon as we flew home; another left a voice message so full of reassurance that it brought me to tears. A neighbor delivered a homemade lasagna; Charlie’s orthodontist sent cupcakes to our house. The teachers at Whitman were patient and understanding, giving Charlie plenty of time to catch up on assignments.
In that awful time in Honolulu, before we knew the diagnosis, I had made a few bargains with the universe. I wanted to honor them, to focus only on the important things, but what I came to realize is that you can’t ignore the little stressors, either. You still have to deal with insurance mix-ups and disappointments at work. I try to remember what really matters. Being kind. Letting go of grudges. Recognizing small acts of kindness from strangers, like when the guy delivering food to Charlie’s hospital room stopped to point out the beautiful view of the Washington Monument. Or the way the staff at the entrance desk kept calling me “honey.” I feel grateful—for Charlie’s health, first of all, and for the calm goodness of the people in my life. I could not have managed without RP’s quiet strength and humor and sweetness—or without Tessa, who’s just like her father, strong, funny and loving but not in a showy way. Our parents were scared along with us, but they showed us nothing but love and encouragement.
I still have moments of alarm. Recently a woman called from Children’s to schedule a follow-up appointment, and I found myself answering “yes” when she asked if Charlie had any implants or other metal in his body. Who’d have thought my perfect boy would ever have a titanium plate on his skull? His hair hasn’t quite grown back over the incision, and I worry that he’ll always have a scar. His intelligence, personality and abilities are all intact, but you don’t go through something like this without being changed by it. He’s almost back to his low-key self, but sometimes the impact of the surgery still hits him. He worries about flying now, and he’s fearful of things he used to love doing, like riding his bike or rock climbing. He’s afraid of having another seizure, even though the CVM is gone. But he’s stronger now, and more grateful.
The same goes for me. Everything is still raw, and I probably still talk about it too much, but I’m no longer someone who worries about my kids being five minutes late to school or an appointment. I’m better at just not caring about things I shouldn’t care about, like what Tessa is wearing out to dinner, or what grade Charlie got on a math quiz. “I can’t believe how strong you and RP are,” one friend told me. But I wasn’t always. I did have one moment of horror and self-pity, at home between hospital stays, when I cried silently on the floor of our laundry room. But then I got up, folded the clothes, took the dog for a walk and got ready for Charlie’s next appointment.
Nadya Sagner is a writer, editor and art consultant who lives in Bethesda.