Your Heart is the Size of Your Fist

by Martina Scholtens

  Weeks ago this woman had been living in a camp on the Thai-Myanmar border; now I was directing her to a geneticist, via a complicated bus route from her Langley apartment, for a condition she’d lived with for her entire life. I asked for questions, for her thoughts on my recommended plan, and she said simply, “Yes, Doctor.”

  The 2:30 patient needed to be offered prenatal genetic screening. Although this meant a complex discussion, I presented the same options to all patients, regardless of literacy level, ethnic origin, or religious practice. I’d been surprised too many times by patients’ choices to feel comfortable making assumptions about their values.

  I turned to my computer, typed “Down syndrome” into the Google search bar and clicked “Images.” I turned the screen toward the patient, and she gazed at the gallery of faces, all with up-slanted eyes. Like every patient, no matter country of origin, she nodded in recognition. The incidence of Trisomy 21 is just over one in a thousand births worldwide and affects all ethnicities.

  She spoke in Swahili. “Mongolism,” said the interpreter. “A man in her village looked like that.”

  “This is one of the conditions that the extra tests can diagnose,” I told her.

  I pulled a laminated chart from my drawer and explained that the likelihood of having a baby with Down syndrome increases with age. She was thirty years old, and her risk was about 1 in 840. It rises to 1 in 356 for a thirty-five-year-old, and shoots to 1 in 94 when a woman passes forty.1

  I could see that she was lost in the numbers. “The blood test can give a more accurate prediction than this chart,” I explained. “If it shows a very high risk, you could have further testing to say for certain whether the baby has the condition. That would involve putting a needle into your belly to get a sample of the fluid around the baby.”

  She looked alarmed at this. “She didn’t do any tests with her other babies and they were healthy,” said the interpreter. “Why does she need it with this one? Is there a problem, Doctor?” They both looked at me anxiously. She’d had no prenatal care for her other pregnancies; all were birthed successfully in her village hut with a midwife. Why was I complicating things?

  “I have no reason to believe that your baby isn’t healthy,” I said. “It’s your choice whether to have the extra testing.”

  This didn’t reassure her. “You’re the doctor,” she said. “You decide!”

  I switched to the third person. “Let me tell you why some women choose to have this test, and why others don’t.” Some women did the test for peace of mind, I explained. Some wanted to know of any health problems ahead of time, to be prepared. Others chose to end the pregnancy. Some made arrangements for adoption.

  She interrupted me for clarification on adoption. She looked disbelieving when I explained that some parents relinquish their child to another family to raise. “People give their baby away?” she said incredulously. “Why wouldn’t they just have an abortion?”

  Patients often felt strongly about pregnancy-related choices. I’d had patients who were appalled that someone with a prenatal diagnosis might choose to end the pregnancy; they accepted their baby’s condition as divinely determined, and were opposed to abortion on religious grounds. Others considered it morally reprehensible to knowingly bring a child with a disability into the world. Those with opposing views held them with equal conviction.

  I went on to explain why some women chose not to do the blood test: the process caused too much anxiety; they wouldn’t risk miscarriage with an amniocentesis in the event of a concerning result; or they would continue the pregnancy under any circumstance.

  By watching the patient’s reaction as I described the choices others had made, I could usually predict her own decision. This patient was inscrutable, though. I asked what her thoughts were.

  The interpreter spoke briefly in Swahili and turned back to me. “So what should she do, Doctor?” I had the impression they were both being patient with me.

  I’d done my best to enable her to make an informed decision, although I wondered how much good I’d done. She’d walked into a routine prenatal visit with no concerns, and I’d introduced confusion and reason to worry. She was illiterate, so even if I could find a patient education pamphlet in Swahili, which was unlikely, it wouldn’t be useful.

  I accepted the responsibility of decision-maker. “Let’s do the blood tests,” I said.

  After printing out the lab requisition I pulled out the Doptone and asked her to lie back on the exam table with her belly exposed. The reassuring sound of baby’s heartbeat would put the sobering discussion we’d just had out of her mind. I squeezed some gel onto her abdomen, ran the probe just over her pubic bone, and immediately heard the whoosh! whoosh! whoosh! of the fetal heart, 140 beats per minute.

  The patient listened in amazement and asked through the interpreter, “That’s my baby breathing?”

  The afternoon’s next patient was Junah. At twenty weeks, she was midway through her pregnancy and this was her last prenatal visit with me. I referred all my obstetrical patients to physicians close to their homes for the second half of pregnancy. With patients scattered across the Lower Mainland, it would be highly impractical for me to attend the deliveries.

  We had barely seated ourselves in my little exam room when Junah began to sob. The interpreter listened intently to her concerns, looked aghast, and relayed to me, “The baby has no arms!”

  I flipped through the chart for the ultrasound report, certain that I would have recalled signing off on a result with such an unusual anomaly. Sure enough, it read: Single live fetus. No fetal abnormalities seen today.

  “What makes you think that something is wrong with the baby?” I asked.

  Like many of the prenatal patients at the refugee clinic, she had not had an ultrasound in previous pregnancies in her home country and was unfamiliar with the procedure. Apparently, the exam had taken forty minutes, much longer than she had expected, and so she became suspicious that there was a medical concern.

  The local radiology departments did not provide interpreters, and most patients did not have an English-speaking friend or family member to accompany them. It wasn’t uncommon for a patient to attend the ultrasound appointment alone, unable to ask questions or understand comments, and to follow up with me a week later to review the results with the assistance of the clinic interpreter.

  Junah reached into her purse and extracted a printout of an ultrasound image. It was a lateral view of the fetus, with the skull, vertebrae, and protuberant abdomen readily identifiable. She gestured at the picture. “No arms!” she repeated desperately. I could see that to an untrained eye, the baby’s upper limbs would indeed appear to be absent.

  “The baby does have arms!” I reassured her. “They’re not clear in this picture because of how the baby’s holding them. Look—I can see the fingers of the right hand over here, and the left shoulder over here.” I showed her the corresponding white streaks on the image.

  While I enjoyed being an instrument of reassurance, and while it was a pleasure to offer her such enormous relief, it disturbed me that she’d had to navigate the ultrasound experience and its aftermath alone. No mother should have to go a week convinced that her baby has no arms.

  The afternoon’s final patient was someone I had referred to an obstetrician months before. She was now just six weeks from her due date. The interpreter had called me that morning, concerned, saying that the patient had missed her last appointment with the specialist and refused to return for follow-up. She had indicated that she would be willing to see me, though. Could I talk to her?

  I had called the obstetrician’s office for information and spoken to the exasperated medical office assistant. “It’s urgent,” she said. “She needs to be induced for SGA, but she’s disappeared.” SGA means small for gestational age. The baby wasn’t growing adequately in utero and needed to be delivered for medical intervention.

  “I’ll see her this afternoon and see what I can do,” I had told the in
terpreter.

  The patient sat across from me now, her belly unusually large for my clinic.

  I didn’t understand why she would refuse a procedure if her baby’s health was in jeopardy, but my policy in the clinic is to never ask a question beginning with why. The word implies judgement. It puts patients on the defensive, asking them to explain themselves. “How are you?” I asked. “What’s happened?”

  “They say they need to take the baby out, because it’s so small. But that can’t be right. If the baby’s too small we should leave it in longer, to let it grow.”

  No one had taken five minutes to hear her concerns and address them. A fifteen-minute discussion later, I was calling the specialist’s office on her behalf to schedule the induction. Clinical acumen and surgical skill counted for next to nothing if you didn’t gain the patient’s trust and include them in decisions around their care.

  25

  I PAUSED OUTSIDE THE DOOR TO the exam room, my last minute alone with the terrible news. It felt inequitable, me lingering in the hall with knowledge of her results while she waited patiently in a chair with her purse in her lap, unaware. I did my best to give awful results well, but a soft knock, a turn of the door knob, a few words, and a life would change forever.

  The patient was a thirty-four-year-old Congolese woman. She was a community educator from Kisangani, a mother of two, and a widow. She was here to follow up on her screening bloodwork. Her name was Grace.

  The results were positive for HIV. I gently told her the diagnosis through the French interpreter. The interpreter looked shaken, struggling to keep her face impartial with tears in her eyes, but the patient said little. I confirmed that she understood what HIV was.

  “Yes. She cared for many people who died of it back home,” said the interpreter.

  HIV treatment and prognosis were different in Canada than in her village, I explained. “With medication and regular doctor visits, most people in Canada with HIV live long, productive lives.” It felt like a platitude; it could hardly compete with what she’d seen and heard and smelled in Kisangani.

  I’d given many HIV diagnoses over the years, and Grace’s stoicism was unusual. I asked how her husband had died. Pneumonia, she told me. He was thirty-two years old. Did he have HIV? I asked. No, pneumonia, she repeated.

  “Have you ever been told you have HIV?” I asked. Refugee patients often did not volunteer medical information that was clearly relevant by Canadian standards. I’d learned to ask questions point blank.

  “Yes,” she said softly. “In the Congo, last year. But I didn’t believe them.”

  I swiftly dispelled that hope. I showed her the lab results: The Western blot and confirmatory tests were positive, and her viral load was 16,000 copies/mL. “The lab triple-checked your results,” I told her. “There’s no doubt about your diagnosis.”

  Her CD4 levels, the immune cells attacked by the virus, were just below the normal range at 350 cells/μL. The rest of her labs, including kidney and liver tests, were normal. She felt well and her physical exam was unremarkable, with no sign of opportunistic infection.

  “Even though you feel well right now, it’s best to start antiretroviral medications,” I advised. “It will slow the progression of the infection.” I reviewed the options for treatment.

  She shook her head. “No. No medication.” I waited to hear her concerns. Did she need information about side effects, or to be reassured that the medications were covered? Then she said the words for which I had no argument: “I believe in miracles,” she said with quiet confidence. “Jesus will cure me.”

  From the age of six, I pushed my sister to school in an oversized stroller. Julia is thirteen months older than me. While she could use a walker, the three blocks to school were too much for a seven-year-old with cerebral palsy.

  We shared an upstairs bedroom in our small home in Burnaby. After our dad had read the story of Peter healing the lame man from the children’s Bible after dinner one night, Julia and I prayed in our beds for our own miracle. We decided to give God the night to do His work. In the morning I watched as she stiffly moved her feet from the bed onto the rug. She pushed herself to standing, wobbled, and attempted her first step. She toppled to the floor, right arm contracted tightly against her body.

  Our prayers hadn’t worked, and I knew the reason from the nightly Bible stories: my faith wasn’t strong enough. I suspected my impure motivation was a factor, too. I desperately wanted Julia to walk, but I also wanted the importance of bursting into the kitchen and telling my parents the best news of their lives. Jesus could heal her, I was certain. He simply wouldn’t, and that was my fault, not His.

  That was my view on miracles well into adulthood: they could happen, but they didn’t, and they wouldn’t. I must have been thirty-five when I finally acknowledged that perhaps this meant I didn’t believe in miracles at all. But plenty of people around me did.

  “The eighteen-week ultrasound showed cysts in her brain,” one of my friends said at a birthday party that weekend, bouncing her six-month-old on her hip. “But everyone prayed for her during the rest of the pregnancy and she was born perfectly healthy. A miracle.” There were appreciative murmurs from the guests.

  Spontaneous resolution of a choroid plexus cyst, I corrected her, silently. They occurred in 1 to 2 percent of pregnancies, and almost always disappeared on their own. I took another sip of wine and kept quiet. Everybody loves a miracle. I wasn’t about to be the spoilsport.

  Over the years, I’d quietly dismissed every account of a healing miracle I’d encountered. Every story told to me had to have a medical explanation. What others attributed to miracles I assigned to chemotherapy, rehabilitation, natural course of illness. Others invoked the supernatural when they could not explain something, or were desperate.

  Medicine continually seeks explanation; writing something off as a miracle flies in the face of the purpose of scientific research. There’s plenty in medicine that is not currently understood, but will be eventually, with the advancement of science.

  And so I didn’t encourage Grace with the story of another of my HIV-positive patients, an Eritrean woman who also refused treatment, and whose viral load remained undetectable for years, regardless. That patient so puzzled me that I retested her for HIV, and called the microbiologist wondering if it might be a false positive. It wasn’t, he assured me. Some might call her a miracle, but we called her a non-progressor. We didn’t know why she wasn’t deteriorating, but we were certain there was a reason. It just hadn’t been discovered yet.

  When Grace told me she was forgoing emtricitabine, tenofovir, and efavirenz in favour of divine healing, I didn’t protest, at least not outwardly. She wasn’t asking me for a miracle, or even expecting me to believe in one. She’d simply confided her own intentions to me. I didn’t want to spook her with arguments; I wanted her to continue to come to see me.

  “Let’s check your blood again in two months,” I suggested. “Come back then and we’ll review your CD4 and viral load.”

  “They will be better next time,” she said. She spoke with conviction. Her smile was serene. I could see something beautiful in her belief, but I couldn’t have shared it even if I’d wanted to. And I’m not sure she wanted me to. It would be unnerving, I think, to learn that one’s doctor relied on supernatural intervention to treat patients.

  “I hope so,” I told her. My pragmatic thoughts slunk to the fore. I only hoped the inevitable downward drift would be slow enough that I’d have enough time to convince her to put her hope in reverse transcriptase inhibitors.

  In six weeks, her viral load had not dropped but her CD4 count increased to 380 cells/μL. Given that a fluctuation of 30 percent in a day is still within the normal range, I didn’t put much stock in the value. But Grace did.

  “I wondered whether to ask the church to pray for me,” she confided, her quiet voice as excited as I’d heard it. “But I didn’t want the whole community to know. Jesus heard my prayers, though.” She was
buoyant.

  Two months later, the level dipped to 340 cells/μL. This was not a significant change from baseline, but Grace was deflated. She resolved to pray more. I told her that Atripla could be taken once daily with minimal side effects. She smiled at my persistence, me of little faith, and reminded me: “I trust in Jesus.”

  For months Grace’s CD4 bobbed gently around 350 cells/μL, and we bobbed in place, too. At every visit, she reported her religious practices, and I reported her lab results. Each small dip was followed by a spike, so that her hopes were renewed. We weren’t going anywhere.

  Then I learned that she had a new partner.

  “Did you tell him that you’re HIV positive?” I asked. She hadn’t. She didn’t want word to leak out to the African community in Vancouver.

  “Are you using condoms?”

  “Sometimes.”

  It was one thing to accommodate her hope for a miracle, but it was another to put others at risk while we waited. HIV non-disclosure is a criminal act in Canada. “You need to tell him,” I urged. “And you must use a condom every time you have sex.”

  She nodded and said nothing for a minute. Then, in her soft voice, “He won’t use condoms, even when I tell him to.” After a pause, “I’m afraid to tell him about my HIV. I’m afraid he will hurt me.”

  We talked about safety, and her options. We talked about healthy relationships. And then I doggedly brought up treatment, again. “Perhaps Jesus could work through the medication,” I tried.

  She thought about that. “Maybe.”

  Six weeks later she changed her mind without fanfare. “I ended my relationship,” she told me. I’d barely tasted the relief when she continued, simply, “I’m ready to start the medication.”

  We looked at each other. How strange that this moment of her loosening her dependence on the divine could feel so holy. I said only, “Yes.” I sent in the Atripla prescription and arranged an appointment with the pharmacist.