With Her Son Suffering from a Mysterious Illness, One Mother Finds Hope in an Experimental Treatment
Our baby is two days old when our pediatrician sits us down and says, “We got an abnormal test result.” The terror I feel at these words must show because she immediately adds, “But it’s a screening, not a real test—definitely not definitive. Very high false-positive rates.” Her prefatory disclaimers don’t ease my mind; the opposite: I’m now anticipating something so awful that it requires the kind of preparation I don’t feel equipped to make. Or maybe her vagueness was intentional, to scare us so when she does blurt it out—“He failed the newborn hearing test”—we’ll sigh in relief at its relative benign-ness, at the absence of words like fatal and malignant.
Her disclaimers, though, turn out to be wrong. It’s not nothing. Not a false positive. One month and four tests later, it’s confirmed: Our baby has profound sensorineural hearing loss in his right ear. A rare condition called unilateral auditory neuropathy (UAN), in which both ears function but the sound from one ear fails to reach the brain or, worse, arrives in a disorganized way that garbles sounds from the “good” ear.
Through the rest of the discussion about therapies and corrective surgeries, associated genetic disorders, I keep calm; I take notes, ask questions. But afterward, as I click his car seat in, he jolts awake, his long fingers stretching up and fluttering before settling atop his giraffe fleece blanket. He’s supposed to be a musician, I think. His fingers were made to play the piano, or maybe guitar, we’d joked moments after he was born. And all of a sudden, my composure breaks. It’s ridiculous, I know; most people aren’t musicians and manage to lead perfectly happy lives. And Beethoven was deaf! So why can I not stop sobbing?
The next three years are filled with waiting. Waiting for the results of MRIs, CTs, neurological assessments, genetic analyses, all for disorders associated with UAN. Waiting for speech, which is a special type of hell, a seesaw of emotions from elation when he babbles ma, bah, dah, to despair when he says “Oo-ah” for green. (“Sweetie, say red.” “Wed.” “Say blue.” “Boo.” “Say green.” “Oo-ah.”) This makes us panic that he won’t ever develop normal speech, but then we’re back to euphoria when a month later, at the height of my frustration, I say, “Green! It’s green, not ‘Oo-ah,” and he says, ‘Gween’ ”—easily, casually, with an innocent grin, as if to say, “Don’t freak out; it’s no big deal.” By the time our baby is a toddler, we’re settled into a routine of speech and auditory-processing therapy, and things seem, if not resolved, then managed. When the last batch of neurological and genetic tests comes back normal, I feel a sense of completion.
Which may be why we don’t realize it when trouble pops up again. Having conquered one medical problem, you don’t expect a second, wholly unrelated medical problem for the same kid. It’s a matter of fairness and parity; the first crisis should inoculate you against others, shouldn’t it? We’re all done with crises, thank you very much. When our toddler stops gaining weight, I think it must be a picky-eating phase. The back-and-forth between diarrhea and constipation, I attribute to potty training and too much juice, or maybe that stomach bug going around. It’s not until he starts throwing up and holding his stomach, crying that it hurts, that I take him back to the doctor.
In some ways, I’m more prepared—I know what number to call for insurance pre-authorizations and what back roads to take to the children’s hospital during rush hour—but emotionally, less so. When we get in the hospital elevator and my son reaches to press three, and I tell him no, we’re seeing different doctors today, on floor two, the fact that he already knows as a four-year old which button to press seems spectacularly unfair. That he now has one more button to learn makes me want to scream.
The lowest point comes a few months later, when he undergoes an endoscopy-colonoscopy-biopsy. He has a bad reaction to the general anesthesia—as he comes out of it, his eyes bulge wide and he starts wailing, a loud, screechy sob that reminds me of ghok, the full-throated ceremonial wail of Korean funerals. My son’s voice brims with grief, the raw, shaking cry of a child who’s been abandoned, bereft and alone. It takes fifteen minutes to calm him down. The anesthesiologist says it’s fine, a “not ideal but not atypical” reaction he’ll forget about when the drugs are out of his system, but two months later, working on an “All About Me!” poster for preschool, he comes across a magazine picture of a doctor holding an anesthesia-inhalation mask and glues it on the “things I don’t like” spot.
I first hear about hyperbaric oxygen therapy, or HBOT, about three months after the diagnosis, which is “celiac disease and ulcerative colitis, existing comorbidly,” according to the gastroenterologist’s report. (Note to doctors: Comorbidly is not a good word for children’s medical reports.) Long used by hospitals for carbon-monoxide poisoning and decompression sickness, HBOT is becoming a popular experimental treatment for a variety of conditions, from cerebral palsy and autism to Lyme disease. Damaged cells need oxygen to heal, so the theory is that deep penetration of extra oxygen can result in faster healing and regrowth. A patient gets that extra oxygen by sitting in a tank where the air pressure is increased, which allows the lungs to absorb more than they normally would.
A year prior, I would have dismissed HBOT out of hand. It’s not FDA-approved for ulcerative colitis, and I can’t find any double-blind studies proving its effectiveness. But with my child still in pain after months of standard treatments, his ribs showing through his skin, I’ve become desperate. The new standard becomes: Could this be harmful in any way? My son’s doctor doesn’t approve, exactly—he warns it might (and probably will) be a waste of time and money—but when I ask what he’d do if it were his own child, he sighs and admits he might try it.
Our first session is on a hot July morning. The pressurized chamber is painted a light blue, the color of nurseries and cloudless skies. “It’s a submarine,” my son says, and I laugh and nod. He’s right. The thick steel walls, the oblong tube-shaped frame, the sealed hatch: It reminds me of the Beatles’ Yellow Submarine. I chose this particular HBOT center for the owner-operator’s hypervigilance. Because the pressurization puts stress on eardrums, he forbids “dives”—as the sessions are called—when the patient has an ear infection, and he’s extra-cautious with my son, checking his ears with an otoscope before and after each dive. He requires us to wear all-cotton T-shirts and drawstring pants (synthetic clothing can set off a spark, and the presence of pure oxygen increases the risk of fire), and makes us put all shoes, jewelry, and electronics in storage cubbies. To make the hour-long dive without toys or books bearable for the kids, he’s set up DVD screens outside the portholes with an audio feed piped inside.
We go in with three other patients and their mothers and sit, side by side, along the wall. The operator closes the hatch and seals us in. I feel somewhat claustrophobic, but I hold my son’s hand and squeeze, curl my lips into what I hope resembles a reassuring smile. When the process starts, my eardrums feel tight, like when a plane is landing, and I hand my son the special “nose balloon” from his ENT, designed to help equalize the pressure in his ears. Five minutes later, once the pressure is 1.5 times higher than normal (equivalent to what you’d feel about seventeen feet below sea level), we help the kids put on plastic helmets, which are connected by tubes to the oxygen tanks outside. I tease my son that he looks like he’s wearing a fishbowl on his head. He laughs and says, “No, like astronaut.” He settles back and watches the DVD, his face bathed in the glow of the video.
We do 40 sessions over the next month, consisting mainly of double dives—one morning and one evening—which give me glimpses into the lives of the other patients. The majority are kids with cerebral palsy or autism, but the severity varies greatly; some are nonverbal or need feeding tubes, and others have anxiety or sensory issues that aren’t readily apparent. Despite this range, it’s remarkable how much intimacy builds. Partly it’s the atmosphere; once the hatch is sealed, we’re locked in a dark, confined space with an eerie confessional feel. There’s nothing to do except talk—no music, no magazines, no phones—so we trade our life stories, the minutiae of our day-to-day routines. But even more, it’s our kids, trapped in this chamber hour after hour, with no way out. There are disasters along the way, little and big. The near-daily bathroom emergencies teach us to keep pee jars and disinfectant wipes close by. One day, a girl with a fecal-smearing tic reaches into her pants, pulls out a handful of feces, and starts smearing it on the wall. When a thunderstorm knocks out power for several days, the generator keeps the HBOT functioning, but the AC and DVD are offline. It feels like a sauna inside, and the portable DVD player the operator has duct-taped outside a porthole is hard to hear. A ten-year-old boy with autism takes off his oxygen helmet in frustration and bangs his head against the steel wall. It takes all four adults to pull him away.
It’s strange how, until now, being around other moms—at my son’s playgroup or preschool—I’d burned with resentment at how unfair life had been to my child, to me, with the multiple-medical-problems whammy and the nonstop researching and cooking and insurance-appeal filing that entailed. The HBOT chamber is only a few miles away, but it feels like a different world, surreal and distant. Here, we are the lucky ones: my son, who can talk and run and sing, and I, who can drop him off at school and pick him up hours later and get a huge, tight hug and an earful about his day. It makes me feel sheepish, almost shameful, like I should apologize that my kid is less impaired. But mixed in with that guilt, I feel gratitude, wild and intense. I’m dizzy with it.
Toward the end of the 40 dives, I take my son for a hearing checkup. During the test, the audiologist frowns, a concerned look on her face. “What’s wrong?” I say, though I already know. It’s the HBOT. The pressurization harmed his ear, and now, in my quest to heal one part of his body, I’ve messed up another. My stomach lurches, and I’m trying to keep from throwing up when she says, “He has hearing in his right ear,” and hands me the chart. The line that has always been flat is showing response in lower decibels. Hearing. Only for bass tones. Probably not enough to hear voices, especially women’s voices. But still, it’s something. When I tell the other HBOT moms, they call it a miracle. I shake my head and say, “It’s not full hearing, just a little bit.” “Well, then,” one mom says, “it’s a little miracle.”
At the end of the summer, there are more little miracles. My son’s stomach has stopped hurting, and he’s gaining weight again. The girl with OCD has stopped fecal-smearing; her mother has tears in her eyes when she reports this, and we all whoop and high-five. The mom of a teenage girl with cerebral palsy says she’s been laughing out loud. “She’s making actual sounds. Can you laugh again, baby?” the mom asks, and the girl opens her mouth and says, “Huh.” It sounds somewhat mechanical, but the grin on her face makes it clear: It’s an exuberant, joyous laugh. We all join in, caught up in the wonder of this, the first deliberate sounds this girl has made in years.
It’s hard to know how much of the improvements are due to HBOT rather than one of the many other therapies we’re all doing. Currently there’s insufficient research to claim that HBOT is helpful for digestive disorders like my son’s. In his case, removing gluten might have allowed his gut to heal, and the timing was coincidence. “Sudden deafness” is now, though it was not then, a condition treated by HBOT in the U.S.; there are clinical trials and research papers to support its impact. UAN is a different type of hearing loss, but maybe it’s not a coincidence, after all.
The baby with long fingers is now a teenager. Speech therapy, auditory-processing sessions, stomachaches—these are distant memories. Celiac disease is easier to manage now that gluten-free is everywhere, even (as we discover on visits) in college dining halls. He still can’t hear well in one ear, but in an ironic twist, he has perfect pitch, and he plays four musical instruments. He’s driving now, which is terrifying, but at least he can hear honking in both ears—which makes it slightly less terrifying. He’s also learned to use his disadvantage to full advantage, ignoring the things we tell him and later saying, “I guess I didn’t hear you. Hearing loss—sorry!” Which is exactly what my husband joked he’d do, back in the hospital seventeen years ago—to make me feel better, to say our baby would be OK. And now I do, and he is.
