Your Heart is the Size of Your Fist

by Martina Scholtens

  In the exam room, I sat facing the Bedouin patient, a tiny woman with white hair who appeared to weigh ninety pounds. She looked around the room with interest. The interpreter was seated to my left, and the medical student sat next to her, entranced. The patient looked at me with bright eyes, and I gazed back. She wore brown robes and had tribal markings on her face, dark blue geometric figures on her forehead and chin. I wore a navy suit and mascara. She didn’t speak English, and I didn’t speak Arabic. She was from the Syrian desert, and I’d grown up in the Pacific Northwest. We regarded each other with mutual curiosity.

  The nurse had noted high blood pressure during the assessment at Welcome House. I gestured for the patient to push up her right sleeve and took the blood pressure cuff from its holder on the wall. She appeared frail, so I decided to forgo the complicated task of helping her climb from a step stool onto the exam table, and to take the measurement from where she sat next to my desk. The coiled black cord connecting the cuff to the wall-mounted sphygmomanometer stretched taut as I gently Velcroed the cuff around her arm. The room was quiet except for rhythmic puffing as I began to inflate the cuff. Suddenly, there was a loud pop as the cord, stretched to its limits, snapped from the wall, struck me across the torso and then dangled, tightly coiled again, from the patient’s arm. I jumped. The patient looked up at me, and when she saw I wasn’t hurt, she squeezed my arm and laughed out loud. So did I. And there it was, a foothold on common ground.

  We spent the next half hour taking a proper blood pressure measurement, reviewing blood work, talking about her grown sons, and discussing her housing situation in Coquitlam. When I ushered her out after the visit, the interpreter said to me, “She wants to know if you have children.”

  “Yes.”

  “She wishes God’s blessings on them.”

  4

  IT WAS ALWAYS AWKWARD WHEN a patient requested “enough condoms for a month,” and I was left to gauge whether to dispense two or forty-five. I’d given the patient in front of me—a twenty-three-year-old Kenyan woman—a generous handful of prophylactics in a discreet paper bag at her last visit, at her request. I’d encouraged her to consider a more reliable form of contraception, such as an IUD or hormones, but she declined. She’d had irregular menstrual bleeding on birth control pills in Nairobi and was reluctant to try anything other than condoms.

  Now her period was two weeks late. Before I did the urine pregnancy test, I asked, as I always did, whether a positive result would be good news or bad news. The Swahili interpreter relayed my question. “Babies are always good news,” said the husband reproachfully. “Gift from God.” The patient, wearing a brilliant patterned pink tunic and matching headscarf, said nothing.

  Minutes later, I broke the good news to them. “This is your fault!” said the husband. “We ran out of condoms but we had to wait weeks to get an appointment with you.”

  I looked at the patient. It was difficult to catch her eye. “Maybe this one is a girl,” was all she said. They had three boys at home. The oldest was five.

  Unplanned pregnancies in my patients always surged in the months after arrival in Canada. The cause of the fertility boost was unclear: the new-found privacy of one’s own home, maybe, or physiological release after years of stressful living. Some patients were dismayed at the timing, concerned about the potential impact on finances and English class attendance. And of those that were pleased with the news, none had been on the recommended three months of folic acid to prevent neural tube defects.

  I considered family planning an urgent issue. As well, most eligible patients had never had a Pap test or mammogram. I booked every woman for a clinic visit devoted to sexual health soon after her arrival.

  It was two weeks since I had met the Haddads, and Junah had an appointment for such a visit. I saw her alone, with just the interpreter. She wore a navy coat, with a floral headscarf wound snugly around her tired face. Her birthdate in the chart had surprised me; she looked at least ten years older than forty. It was the weariness and the sag of the shoulders. I motioned for her to sit in the chair next to me. She glanced nervously at the tray next to the exam table, with the metal speculum placed next to a collection of swabs and slides. I eased into the visit with my standard questions.

  The GTPAL score is an obstetrical method to compress a woman’s reproductive history—fertility, miscarriages, twins, abortions, anguish, joy—into five digits.

  G for gravida. “How many times have you ever been pregnant?” I asked Junah. Layth, Nadia, and Sami made the number three, at minimum.

  “Six.”

  G6, I wrote. “How many babies did you deliver?”

  “Three.”

  T for term, P for preterm. “Were they born on time, or early?”

  “All three late!”

  G6 T3 P0.

  A for abortion. “What happened to the other three pregnancies?”

  She described three first-trimester miscarriages.

  G6 T3 P0 A3.

  L for living children. I didn’t need to ask her this one. That moment of drawing the 2, the curve devolving into a flat line when it should have been a symmetrical, buoyant 3, caught me in a way that the family’s weeping at the first visit hadn’t. Sami had been an integer, a whole number. The awful story was captured in a score that had been reduced by one.

  G6 T3 P0 A3 L2.

  I was always cautious about how I asked about contraception. The negative connotations of the accepted Western terminology contradicted the view of many of my patients that children were a divine blessing. Rather than “contraception” or “birth control,” I referred to “family planning” or, better yet, “birth spacing.”

  Many of the couples I saw, particularly Muslims, quietly differed on how many children they wanted. Women sometimes returned to see me alone and request contraception that they could keep secret from their husbands; the nurse and I gave them injectable progesterone every thirteen weeks. One patient requesting clandestine contraception, a twenty-one-year-old Afghani woman with three kids, had explained to me desperately, “I want to go to school, learn English!” (Her husband came to see me months later concerned about his own virility: “Doctor, we’ve been trying for six months now, and no baby!”)

  Junah was forty, and it had been twelve years since her last pregnancy. I took a gamble. “What do you use for birth control?” I asked.

  “Pills.” She pulled a slim package from her purse. The graphic was soft pink and cream, the favoured palette of pharmaceutical companies marketing to women. It had Arabic script on it, Bayer’s trademark cross in the corner, and “Gynera” in English.

  I was relieved that Junah was using contraception. She had the dual risks of advanced maternal age and consanguinity. Pregnancy would be high risk.

  “We don’t have Gynera in Canada, but I can prescribe an equivalent,” I told her, squinting at the tiny script on the back of the box. I was unable to even determine whether the list of active ingredients was in Arabic or English.

  “I need a baby,” said Junah, quietly, urgently.

  I looked up at her, then at the interpreter.

  The interpreter conferred with Junah. “She wants to get pregnant,” she confirmed. “She wants a healthy son. Now that she is starting her new life in Canada, it is a good time.”

  “No pills,” said Junah, taking the Gynera box from my desk and dropping it into the garbage can. She smiled at me. It was clear that her mind was made up.

  I laid out the issues as gently as I could. A forty-year-old woman, on average, only ovulated four times a year. Should she conceive, the risk of chromosomal abnormalities, such as Down syndrome, were greatly elevated by her age. The fact that she and her husband were first cousins contributed further genetic risk. I kept quiet about my concerns that her miscarriages and Layth’s disability were due to consanguinity. Pregnancies in women of advanced maternal age carried higher risk of everything from pre-eclampsia to preterm labour, I concluded.

  She tolerated my warnings serene
ly. “I need a baby,” she repeated simply when I had finished. I realized that with Sami’s death, the worst had already happened to her. She feared nothing.

  The choice was hers, not mine. Not all physicians felt this way, it seemed. I’d had another patient in her forties who told her gynecologist about her wish to conceive a son. The specialist prescribed what the patient understood to be a prenatal vitamin. When the patient described the dosing to me—“Three weeks of the red vitamin, one week of the white”—I realized that it was an oral contraceptive pill.

  “There are some things we should do before you get pregnant,” I told Junah. “Some blood tests to check your health and to see whether you need any vaccines. You should take prenatal vitamins for three months before you try to conceive, to reduce the risk of health problems in the baby. And I’d like you to see Medical Genetics.”

  We waited while the printer hummed and churned out the requisition and prescription. I felt resigned. Junah looked elated.

  5

  A FAMILY DOCTOR TOLD ME ONCE, “It can be tedious seeing forty patients a day, but if one of those cases is interesting, it’s worth it.” We didn’t see the usual lineup of coughs and prescription refills at the refugee clinic, though; something interesting came up hourly.

  My eleven o’clock patient, an Iraqi man who had spent the past four years in Jordan, heaved himself onto the exam table and settled back, head on the papered pillow. I asked to look at his belly and he pulled up his green knit sweater, loosened his pants, untucked his checked shirt, and tugged that upward, too.

  I’d seen thousands of abdomens, but I was taken aback by this one. It was riddled with six-inch scars that looked like graffiti, hurried purple strokes. The marks weren’t from trauma or torture; they were surgical scars that were illegible to me.

  If a Canadian-born patient were to lie on my exam table, I could give a fairly accurate account of their medical story from their abdominal scars. A Pfannenstiel incision, a discreet line skimming the pubic area, suggests a Caesarean section. Three short, neat scars scattered over the right upper quadrant point to a laparoscopic cholecystectomy to remove a gallbladder. A one-inch line angled over McBurney’s point in the right lower abdomen is almost always from an appendectomy.

  But when I examined patients from the world over at the refugee clinic, surgical scars sometimes baffled me. I couldn’t imagine what surgery could possibly have required an incision running from under the right ribcage, across the belly to the left lower abdomen. I didn’t know what series of procedures would have resulted in a flank criss-crossed with red finger-length scars, or why an appendectomy scar would be five times the length I would expect.

  The Iraqi man could tell me only that “the surgery was to stop the pain in my stomach.” Like most of my patients, he had no medical records.

  I examined his scars. I palpated them. I could not translate them. I ordered some blood work and arranged an ultrasound to provide some clues.

  Detective work to piece together a medical history in the absence of records was routine at the clinic. The morning’s next challenge was Layth. He stood up eagerly when I called him from the waiting room. He wore a fitted baby blue T-shirt with navy script emblazoned aggressively across the chest: NOT HERE TO MAKE FRIENDS. He beamed at me nonetheless.

  My patients often wore curious things: tap dance shoes from the thrift store, clicking promisingly on the laminate flooring on the way to my exam room; a Justin Bieber backpack on a Syrian senior in a three-piece suit; long johns in a cheerful print of moose and evergreen trees beneath the long black coat and slacks of an Iranian woman, revealed when I examined her swollen ankle.

  The week before, an Afghani mother had brought in her daughters for assessment of their coughs. Although she wore a hijab, the girls, aged four and six, wore Western clothes. I asked them to remove their coats so that I could examine their chests. The jackets came off, and the sisters were wearing matching pink T-shirts featuring a prominent stylized image of a black bunny with a tuxedo bow tie.

  There was no time for small talk about Layth’s wardrobe. We had thirty minutes for an assessment of his developmental delay. I wanted to move us closer to a diagnosis and determine which investigations and specialist referrals he needed.

  Layth sat next to his dad in my exam room, arm slung affably across Yusef’s shoulders. “How’s your new place?” I began.

  Hani repeated the question in Arabic and relayed Layth’s reply: “It’s good. The neighbours have a dog. He hears sirens sometimes.”

  This was a situation where being unable to communicate directly was particularly frustrating. When engaged with an English-speaking patient, I automatically assessed diction, vocabulary, and rate of speech. A brief conversation could be rich with information regarding intelligence and mood. Layth’s soft Arabic speech told me nothing, and it would be inappropriate to ask Hani’s opinion of his IQ.

  I took a detailed history of Layth’s development from conception. Junah’s pregnancy had been uneventful, Yusef told me, and the delivery uncomplicated. We went through Layth’s gross and fine motor skills, language acquisition, and social development.

  “Floppy baby,” said Yusef, rolling his head. “Hardly moving. When he was sleeping, like a frog.” This was the classic description of an infant with low muscle tone lying on its back, hips abducted and legs extended. “But always very fat,” he continued, poking affectionately at Layth’s belly, encased in the T-shirt like a sausage.

  Nadia, two years Layth’s junior, had walked before he did. He was four years old when he took his first steps. “The week Sami born,” said Yusef. “Good, because not enough people to carry three babies!” Layth didn’t speak until age four; even then, his speech was unclear and he didn’t speak a sentence for another few years. He had always had trouble following even basic instructions. He flapped his hands when excited.

  I moved on to the physical exam. Layth’s most impressive physical feature was his synophrys, or monobrow: his prominent black eyebrows were fused into a massive arch-less ledge. He had widely spaced eyes and a low hairline. He had prominent top front teeth, which he ground continually during the visit. His trunk was generously padded with fat, but he was thin elsewhere, particularly his fingers, which were extraordinarily long and slender. These were mildly unusual features taken individually, but as a constellation, with his developmental delay, they suggested a genetic disorder.

  Given that Yusef and Junah were first cousins, I suspected he had inherited an autosomal recessive condition and received the same damaged gene from both parents. In recessive disease, if only one in a pair of genes is faulty, an individual is unaffected. But if Junah and Yusef had both inherited the same single compromised gene from their common grandfather, for example, and passed on that gene to Layth during the roulette of his conception, the pair could manifest as a devastating condition.

  Layth had gone sixteen years without a formal diagnosis. Had he been born in Canada, he would have been assessed as an infant. This was not an uncommon issue at the refugee clinic, and it could make referrals difficult.

  One of the most unusual afternoons of my career had occurred during a walk-in clinic years before, when five adult intersex siblings had turned up. They each possessed various combinations of male and female genitalia, which I carefully sketched into their respective charts. Raised in a rural South Asian village, they had never received medical care. Their parents had simply decided in each case whether to raise the child as a son or daughter. Some of the siblings did not identify with the gender selected for them. All of them felt that their condition restricted their ability to pursue relationships and to marry. Where to refer them? Urology? Gynecology? Endocrinology? Medical Genetics? I wasn’t sure any specialist in Vancouver had experience with an intersex patient first diagnosed in adulthood.

  However, no matter how difficult specialists typically were to access, they were always enthusiastic about the unusual cases we referred from the refugee clinic. A man from a remote
South Asian village was diagnosed in Canada with a rare form of congenital dwarfism—one of only three families known worldwide—and went on to be presented at international medical conferences. When a patient was hospitalized with leprosy, three services—Infectious Disease, Dermatology, and Internal Medicine—fought to claim him as part of their turf. A woman with an arm deformity since birth was sent to the hospital’s media department for photos prior to her surgery. Parasitology sent us a Christmas card once with little worms on it, to thank us for all the great specimens we’d sent them that year.

  Patients were grateful for the specialized medical care. While they benefited from the increased interest and attention paid to their diagnoses, I reminded students that patients did not have the same enthusiasm for their conditions that we did. While the professional satisfaction of treating an unusual disease was undeniable, the patient simply wanted her suffering alleviated. No one wants to be the excellent teaching case or the subject of grand rounds.

  I ordered a head CT for Layth and wrote referral letters to Medical Genetics and Pediatrics. Aside from a diagnosis, I didn’t expect much to be offered. If his condition was genetic, there was no cure. I tried to gently probe Yusef’s expectations.

  Patients’ hopes rarely meshed with what Canadian medicine could offer. I’d had a Somali patient with his arm amputated by an explosive weep with happy disbelief when I described a prosthetic arm. But over-expectations were far more common. A patient crippled by childhood polio was bitterly disappointed when an ambulance didn’t bring him directly from the airport to the hospital to be cured.

  “Layth going to school,” said Yusef simply. “We so happy.” Layth would be starting public high school in two weeks, with an aide. His settlement worker had connected him with the Ministry of Children and Family Development, which had made the arrangements briskly and as a matter of fact. There was no debate over whether he was an appropriate candidate for school. It made me proud to be Canadian.