jessicaminiermabe

my writing, photography and the occasional handicraft

My son was born sick. Looking back at those first few days, when I was recovering from a brutal 29-hour labor and emergency c-section, my focus wasn’t on his eye infection. “That’s common in newborns,” the OB/GYN told us. When, after two days of attempting to breastfeed without success, we realized my son wasn’t eating, we were also told this was common in newborns. Two days after that, when my son’s weight dropped well below his birth weight, we began what I later came to see as a spiral of specialists and experts, advisors and castigators, none of whom had any idea what they were dealing with.

henryasleep

Sleeping through his first, clearly visible eye-infection.

At first, each symptom seemed discreet, a solvable problem limited in scope. We cleared up the eye infection easily enough. Then we tackled the feeding issue, or rather, we threw ideas as though it was a medical dart board. We tried lactation experts; we explored latching issues; we fed him through a tiny tube attached to a syringe filled with my freshly-pumped breast milk that we surreptitiously inserted into the corner of his mouth when he sucked at my breast. And we weighed him. There were endless weigh-ins, as though he was a tiny prize fighter or horse jockey. We measured progress in ounces retained. Eventually, he learned to eat, though the process was agonizingly slow.

At six months old, my son developed dark circles beneath his eyes and began to cough. Our family doctor diagnosed a chest infection, but after a long round of antibiotics, it was clear that this wasn’t just the result of cold or flu. As soon as my son stopped taking the medication, the symptoms returned in force. Mucus seeped from the corners of his eyes and dripped from his nose in watery streams. The tops of his cheeks turned red, and his small body grew ever-thinner. He became lethargic and miserably quiet. His illness began to dominate our lives.

balls

On a particularly sick day.

I found a new job, and switched medical plans. This meant I had to find a new pediatrician. Nearing retirement, with wild, Einstein-esque gray hair and a habit of speaking far too quickly, our new doctor was a caricature of the eccentric genius. But he was also a kind man, who genuinely cared about his patients. He and I went over my son’s growing medical history, but nothing seemed obviously wrong.

At eleven months old, my son lost almost all his hair. That was particularly devastating, as he’d been born with a beautiful full head of dark red curly locks so luxurious that strangers used to stop us on the street and ask to touch it. It came out in clumps, and soon he looked more like a wispy cancer patient than a normal baby. He had never really looked sick before. I cried, reminded of my mother’s final, futile round of chemotherapy. Our new pediatrician thought the hair loss might be the result of my son’s medication: what we called his “pink.”

sitting1

Before his hair loss.

climbingup

In the midst of the hair loss.

The diagnosis my son had received at last was chronic sinusitis – recurrent sinus infections. The treatment was full-strength antibiotics. We came to refer to it by its ubiquitous color: “Take your pink, Sweetie.” It was always the same viscous pink liquid, flavored with something sweeter than nature, smelling of artificial strawberries. Every night I measured out a syringe-full and he opened his baby-bird mouth to receive something he knew only as part of normal life. But it wasn’t just the medicine he was growing used to; it was the entire routine. It was agonizing to see my two year-old so accepting of the routine blood draws, the shots, the pokings and proddings. When he needed yet another CT-scan, the nurse wanted to sedate him, but I assured her it wasn’t necessary. My boy already knew how to hold still for pictures of his brain. The nurses at the pediatrician’s office could reel off his vital stats from memory. His chart was over two-inches thick. One inch for each year of his life, I thought grimly.

By then, we’d had several frantic trips to the emergency room, when the infections caused asthma flare-ups. My son and I spent the second hospitalization alone in the too-bright room at Children’s Hospital because my son’s father, never comfortable around doctors, had developed a serious phobia. There was no possibility of sleep, listening to the monitors’ endless beeps and chirps, to the alarms that sounded every time my son rolled over and loosened the lighted clamp affixed to his big toe. Lying there in the half-dark, jammed up against the safety bars on the side of the hospital bed, I decided I was tired of treating one infection at a time, as if they weren’t connected. I wanted answers. Big ones.

The first and simplest answer I wanted was, it turns out, the last I would receive. What was wrong with my child? Our new pediatrician was frustrated. My son was a puzzle he couldn’t solve. Other than the sinus infections, my son had no symptoms. He never vomited. Other than the asthma and sinus infections, he never seemed to suffer from the winter’s flu and cold season.  He had few fevers, slept well, and was passing all his milestones like a champ. Together, we examined the pages and pages of notes in my son’s file. The answer wasn’t there.

My pediatrician told me in his rapid-fire way what his concern was.  One day, my son was going to get an infection and we wouldn’t be able to stop it, because he was becoming immune to the medicines. We were on our third or fourth type of Pink. The pediatrician was right. We were eliminating antibiotics at a terrifying pace as they lost effectiveness. Medicine was helpless and the bugs were winning.

My son and I moved quickly from the comfortable world of the pediatrician to that of the specialist. I quickly learned one thing about specialists: they’re myopic. To his pediatrician, my son was a whole child, with an illness that impacted him in a myriad of ways. To the specialists, my son was a single part of himself. He had sinus infections. To an allergist, that meant he was allergic to something. When test after test showed he wasn’t, the allergist was done. Next we tried an ear, nose and throat doctor. My son underwent surgery on his adenoids and had ear tubes inserted. The adenoids grew back within months, and the ear tubes popped out, one at a time, during one of his routine ear infections. We went to a respiratory specialist, who looked at his lung function and found nothing amiss. Then an immunologist, who took what seemed like pints of my son’s blood only to return without an answer.

Each doctor explored the most common causes of sinus infections in children within their discipline. When each one couldn’t locate the problem, we ceased to be interesting. Sometimes we were given a new referral; sometimes we were simply done. That was when I learned the first answer to a question slightly bigger than I had asked: in this world of specialized medicine, I was on my own.

The whole boy... and some feet.

The whole boy… and some feet.

To the specialists peering down his throat or up his nose, my son was a curiosity, an unsolvable mystery. But in the end, if they couldn’t solve the mystery, it didn’t much matter. Other mysteries would come along. Only I cared about my complete and entire son, about the real child sitting on my lap. Only I lay awake at night, wondering about his digestive health, about his development, about death.

If I was on my own, then I would need to fight this myself. I wasn’t a doctor, but I had access to information. I began to do research into children with chronic, incurable sinus issues. There were so many more reasons why my son might be sick. Some children suffered from horrible rare immune deficiencies. Some struggled with complex allergic reactions to chemicals in the environment. I read theories about poisons and toxins and hormones. I dragged my son to a respected local pediatric naturopath, who suggested, predictably, that we eliminate all milk products. “The only milk he still gets,” I told her tiredly, “is in the mac and cheese they serve once a month at daycare.”

“Even that might be too much,” she told me severely. “You might need to try harder, here.”

I never went back. Instead, I bugged my pediatrician for a referral to the head of Otolaryngology at the Children’s Hospital. The waiting list was six months long. My son was nearing his fifth birthday. He had been on antibiotics pretty much continuously for four-and-a-half years. I asked if we could speed up the referral, given that he had just been hospitalized again. The answer was no, we had to operate within the confines of the system.

And that’s just it: a system, I realized that night as my son slept, was what we had entered. Once inside the system, the rules change. Outside it, we were human beings with individual needs. But here, we were just grease for the cogs in a giant machine: particles in a river of biological lubricant. It wasn’t that the system didn’t need us. It was that it needed us to stay inside the system. Without us, the system wouldn’t exist, and a system exists to perpetuate itself.

I knew the doctors we saw wanted to help my son. They weren’t cold and uncaring. They were simply limited to their spot in the machine. If I wanted to cure my son, I was going to have to push through the boundaries of the system. I was going to have to find the way on my own.

Back on the internet, I hunted down the guidelines issued by the American Academy of Pediatrics on Sinusitis, and looked at the list of doctors’ names printed at the top. Then I emailed the woman at the head of the list. She was in Wisconsin, half a continent away. “My son is chronically ill with sinus infections that we can’t control,” I told her. “We desperately need your help.” Much to my surprise, she responded almost immediately, asking for his file. It took my pediatrician’s office several hours to copy it all, slip by slip, and two express mail boxes to ship the copies to her. By this point, his file was more than four inches thick.

Growing and glowing... if not with health.

Growing and glowing… if not with health.

Just two days later, she responded with recommendations for my pediatrician. Last ditch efforts to discover the truth. She made it clear over the phone that if the tests didn’t reveal an immune deficiency, she was out of ideas. I expressed my fear about his growing antibiotic resistance, and she responded with the same unvarnished truth: we had to get him off antibiotics at this level, and we had to do it soon, or he was going to get a severe infection and we would have nothing left to treat him. Then he would die.

I remember waiting for those test results with a wildly cycling mania and depression. There were hours of buoyant optimism, and longer stretches of bitter defeat. I felt a deep, restless energy. If this didn’t work, what would we do? Where would we go? To the laymen in our lives, a sinus infection didn’t seem like a big deal. My bosses were annoyed at the amount of work I missed, and my family cautiously suggested I might be hovering. Even my now ex-husband, who should have known better, was convinced I was overreacting. Yet the doctors confirmed what I knew from my research: this was a time bomb. Each infection could bring on a hospitalization. Each hospitalization brought a new round of bacterial Russian roulette.

While we waited for the results, the appointment came with the head of Otolaryngology. His office was up on the top floor of the hospital, and it was enormous, nearly double the size of most hospital rooms. I carefully undressed my son and slipped him into a now-familiar cotton robe, then sat him on my lap as I waited, perched in a corner of the giant room on a hard plastic chair. It was a long wait. I sang him songs and stroked his hair. He was tired from his day at preschool, where he’d been learning about things that are transparent, and things that are opaque. He pointed to the window in the door: “the door is transparent.” He pointed to the wall beside us: “the wall is opaque.”  He looked over at the shade on the examination light beside us. “The light is opaque?” he asked, and smiled at me. I could see what he was thinking, that he knew what would happen. I nodded my permission and he pushed the button to turn the light on. The shade glowed a soft, translucent white. “See, now it’s transparent,” my son laughed. I turned the lamp off again. “Opaque!” he shouted. On again. “Transparent!”

The head of the department entered the room at last, with a small phalanx of medical students in tow. Our children’s hospital is a teaching hospital. I knew this. Years before, my son had aspirated his own spit, inhaling it deep into his lungs while down for a nap. For once, this had no relation to his illness, but no one had known that at first. He’d been rushed to the hospital in an ambulance, fighting to breathe, his lungs filled with fluid. As I’d sat in the ER, my son cradled in my arms, one of the new residents had come to talk to me about his x-rays. “We’re concerned,” she told me, “about CF.” I sat up. “Cystic Fibrosis? Isn’t that fatal?” She smiled kindly at my sleeping baby. “Oh no,” she said. “They can live to be twenty-five now.”

I can’t say I was excited to see the residents again. They clustered around the department head, who, without so much as a glance in my direction, sat down on another chair across the room and opened my son’s enormous chart. He flipped through it, commenting as he went on a test given here, a hospitalization there. He was holding court. “A bit of a puzzle,” he said cheerfully, closing the chart, and the residents laughed. He ran through some of the possibilities he was considering, most of which we’d already been through, but since he wasn’t speaking to me, I stayed silent. He laid out a list of tests, which we’d already had, and suggested to the residents that we should think about the surgery we’d already had done. “This is the kind of case that I know all too well,” he told the students. “I saw a lot of cases like this when I was studying back with Doctor…” and he named the woman whom I had emailed in Wisconsin.

“We’ve talked to her,” I interrupted. He stopped and turned to us for the first time. The residents all turned as well. Until this moment, they had been cautiously avoiding actually seeing us, though a few were giving us the once over when he wasn’t looking. “She’s already been through my son’s file. She’s given us a list of tests to do. We’re waiting for the results right now.”

“But,” he sputtered, “she’s never even examined your son!”

Well, I thought, neither have you.

Approaching five years-old, and still on the "Pink."

Approaching five years-old, and still on the “Pink.”

A week later, I sat in my pediatrician’s office, staring at the results of the last round of tests. Every single one was negative. My son’s immune system was fantastically healthy. “If it weren’t for that immune system,” my pediatrician told me, “your son would no doubt be dead.” We were at an impasse. Nothing was left to test, yet the problem remained. A child cannot be healthy with an infection that will never go away on its own, that drains his resources and causes him pain. Only on antibiotics was he safe, but those antibiotics were themselves becoming a threat. I began to cry silently. The pediatrician waved his hands through the air in arcs as he spoke, his hair standing on end in a nimbus around his ears. My son watched him. “I keep thinking,” he said, “what would I do if you walked in my door today? What would I say this was?”

“We’ve eliminated all the basics,” I said. “We did that when he first got sick.”

The doctor’s eyes narrowed. “No, we didn’t. When you started coming here, you had already been through the first few infections. You had already eliminated the obvious stuff with another doctor. But I never eliminated that stuff. What’s the first thing I would say this was? I would say this was GERD.”

GERD is Gastroesophageal reflux disease, commonly known as severe acid reflux. The symptoms in children include chronic sinus infections. They also include vomiting, sleeplessness, irritability, blood in stools, and lots of other problems my son never had. In fact, except for his early refusal to eat and his sinus issues, he’d never had any of the other symptoms. GERD is generally diagnosed by symptoms in children – there are tests, but they are often inaccurate. We had eliminated GERD, as I said, but only because my son’s illness didn’t fit the profile for it. Even the doctor in Wisconsin had crossed it off the list due to the lack of other symptoms.

I remembered Occam’s Razor: the simplest explanation is usually the right one.

“The only way to know for sure,” my pediatrician said, “is to put him on the medication and see if he responds. What do we have to lose?”

Indeed, what did we have to lose? I had tried to solve this on my own, and found nothing. I had stuck to the system… and I had tried to buck it, all the way to the top. None of that had been successful. I was right back where I’d started, looking at my son’s overly-thick medical file with his pediatrician, who saw the whole child with me. I agreed to try the medicine.

We started my son on a nightly dose of children’s acid reducers. A month later, I stopped giving him his “Pink,” leaving him off of it for the first time in four-and-a-half years. I waited for the tell-tale symptoms of a sinus infection: the red cheeks, the runny nose, the lethargy and the secondary ear infections. They never came.

My pediatrician had found the answer: my son had GERD.

It was so simple, this last answer. After all my profound realizations about my own isolation, my powerlessness, the system… to find that the original question had been so easily solved was absolutely marvelous and almost deflating, all at the same time. We had solved the unsolvable puzzle.

I sat with my suddenly healthy son, post check-up, as my pediatrician and I smiled goofily at one another. My son was spinning on the doctor’s stool, looking up at the ceiling and making himself dizzy. Three months later, my pediatrician would retire. We would find someone else to help us, and within a year, my son would no longer need any medicine at all, having outgrown the problem. But for now, we were pleased with our small victory.

My son pointed to the florescent light fixture overhead and laughed.

“If you turn the light off, it will be opaque,” he told us. “Turn it back on and it will be…” He looked hopefully at the two of us.

“Transparent,” we said at the same time.

Charging ahead.

Charging ahead.

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10 Responses to “Writing: The Infinite Possibilities — Learning from My Son’s Chronic Illness”

  1. JackieP

    I am so glad you finally found the culprit. You are a strong woman and your son is lucky to have you. And you are lucky to have him. May light and love always be yours and your sons.

    Reply
  2. Kathleen Mabe

    Jessica I am so stunned by this writing. I know that with me having past memory loss, I would pray that with Henry sick so much I would remember. Thank God you were and are a strong and persist woman. My love to you both, Aunt Kathleen 🙂

    Reply
    • jessicaminiermabe

      Thank you, Kathleen! It was rejected by a parenting magazine, but I figured folks would like it, so here it is :). We send our love and hope to see you soon.

      Reply
  3. Cathy Clark

    Jessica – Thank you for sharing with your online “family”. Your son’s health and your life together is such a blessing. I’m so glad that you found the answer and that Henry is well. Sending you both my love.
    Cousin Cathy.

    Reply

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