I Was Caring For A Patient With Down Syndrome. A Fellow Doctor’s 8-Word Remark Left Me Stunned.

The author at work.“Wow! You were so kind to that little boy!” a paediatric resident told me with a saccharine and insincere tone. I was a third-year medical student, and she’d pulled me aside after she’d witnessed me giggling and zipping trucks along bedrails with a patient. I was also a 25-year-old woman who lacked a professional filter. “Why wouldn’t I be kind?” I blurted out. My voice mirrored my grandmother’s. I don’t remember if the child was experiencing a specific ailment commonly coupled with his Down syndrome, such as leukaemia or a structural heart or digestive condition, or if he was hospitalised for a typical paediatric problem like asthma, appendicitis or some accidental injury. What I remember is the resident’s eyebrows arching and her lips pursing. I realised too late she’d expected me to just say “thank you.”I trained my eyes on the tiny plastic frog dangling from her stethoscope. The amphibious toy meant to distract children while she auscultated their hearts and lungs couldn’t distract me from the sound of my pounding heart. We stood silently facing each other in the hospital corridor, until I heard the little boy’s Tonka truck clank to the floor. Saved by gravity, I pivoted back into his room to pick it up with echoes of my grandmother’s yelling buzzing in my ears.Twenty years earlier, my grandmother Yetta reprimanded me and my cousin for tumbling headfirst down the half-flight of carpeted stairs in her split-level house, wearing the smocked Polly Flinders dresses she’d bought us. It would take me another 20 years to understand that my grandmother’s reprimands captured her purest expression of acceptance toward my cousin Becky, who has Down syndrome. My grandmother’s words bit the air: “Rachel, Rebecca, stop it!” She was a staunch woman with curly jet-black hair who audited taxes for the IRS while raising three boys and running a luncheonette with my grandfather. She had zero tolerance for nonsense. “Sorry, Granny,” I said. “OK, Ede,” Becky said. Eight of her grandchildren called her Granny, but not Becky. “Not Ede. Granny,” my grandmother would chide. Always, my cousin smiled. “No. Ede.” Becky never explained why she used this name.And always, my grandmother smiled back. Their lighthearted refrain was a familiar script interjected between my grandmother’s complaints about the way my grandfather chewed everything he ate and how long it took him to do his daily crossword puzzle.Rebecca Fleishman (left) and the author in Lake George, New York, in 1980.Becky was a year older than me. We spent our elementary school days playing hide-and-seek with our brothers, middle school swimming in her parents’ backyard pool, and high school changing into team swimsuits in our school locker room. My grandparents eventually moved to Florida while Becky and I were still waving hello to each other across our school cafeteria. When Becky and I finished high school in the late ’90s, she moved to California with her mom and stepfather, and I moved to New York City for college and medical school. While I spent the bulk of my time in libraries, Becky completed vocational training and then worked at a bowling alley, and our grandmother discovered email. She sent Becky countless messages from her handle, GranEde, and Becky always replied. I hadn’t meant to be rude by rejecting the resident’s compliment, but my actions didn’t feel praiseworthy or even unusual. The world I knew before medical school was the one modelled by the adults who’d raised me. I’d always known that people with Down syndrome have distinct physical features — what the medical literature calls “stigmata” — and a propensity for certain health conditions and disabilities, but I had never witnessed how they can be subjected to harassment, humiliation, mistreatment and neglect, both in hospitals and outside them. I’d come to learn that “stigma,” a concept put forth by Erving Goffman, encompassed “disgrace attached to a particular condition or trait.” I’d never perceived Becky as stigmatised because our family did not isolate her. For decades after high school, Becky and I were mostly out of touch. I asked family members about her. I liked her Facebook posts. But my strongest connection to Becky was through my grandmother. When I flew to Florida for visits, my grandmother, in between digging through the sale rack at Bloomingdale’s and instructing the deli workers at Publix about the proper thickness of turkey breast slices, gave me the scoop on Becky. She told me about the races Becky swam in the Special Olympics and the volunteer work she did. And she told me, over and over, about the day she took Becky out for Chinese food. Becky was in her late 20s at the time. My grandmother knew my cousin’s attitude about reading was inconsistent, but she refused to capitulate to Becky’s refusals. My grandmother handed her a menu. She waited. My cousin perused it and then announced to the waitress that she wanted “the happy family.” My grandmother, who once sat my father at the dinner table for hours because he refused to eat his peas, scoured the menu and discovered “the happy family” was a combination of several dishes, meant to serve six. She resigned herself to taking home leftovers because Becky had, after all, read the menu. Every time I heard this story, I believed my cousin picked “the happy family” not only because she wanted to eat what was in it, but because the words captured how she felt sitting in a sticky leather booth across from a woman who cherished her. Rebecca Fleishman (left) and the author at Becky’s bat mitzvah.***I was early in my residency the first time I cared for a baby diagnosed with Down syndrome after birth. Becky was not on my mind as I sat, silent, beside my neonatologist mentor while she told a husband and wife that their 1-hour-old child might have this genetic condition. Prenatal testing, which from the narrow perspective of a paediatrician affords parents the benefit of emotional, intellectual and medical preparation before their babies are born, had not flagged the possibility. Two teaspoons of blood drawn after the 10th week of pregnancy, known as “noninvasive prenatal testing,” identifies more than 99% of foetuses with Down syndrome. But this test wasn’t available back then, when a combination of first and second trimester blood tests and ultrasounds (still sometimes done today) identified many but not all foetuses with Down syndrome. Becky was not on my mind as my mentor asked the baby’s name. I was transfixed by the way she spoke with purpose, and without judgment or pity — without implying Down syndrome was bad or tragic. She pointed out the physical features typical for Down syndrome and then asked the parents what they saw as we all peered at the baby’s face, hands and toes.Families receive medical information differently. Some families readily believe the impressions of a physician, some want confirmatory genetic testing before accepting this diagnosis, while still others need time to process before engaging in further dialogue with doctors. My mentor’s goal was to inform the family of the possibility that the child had Down syndrome, not to convince them she was right. The only urgency she had was to build trust. The conversation had been so honest, so compassionate, so pure, that I left the room enchanted with the spell of human connection. I’d never considered that, as a doctor, I could learn to cast sacred spells with words. And so I became a neonatologist — in part because of that mentor and the glittering moment of truth she’d conveyed with raw kindness, and in part so I could chase the same sparkling connections with families navigating the delight of babies’ births while accepting their concomitant medical diagnoses. Most of my patients are either born prematurely or born on time but unexpectedly sick. Almost every day, I reassure families that neonatal intensive care is likely to allow their children to survive. In 1866, Dr. John Langdon Down published a medical paper whose now-offensive title, “Observations on the Ethnic Classification of Idiots,” obscures the importance of describing, and thereby lending medical legitimacy and attention to, human beings with Down syndrome. In 1959, not quite 20 years before Becky’s birth, the discovery that Down syndrome was caused by an extra 21st chromosome established the first link between an intellectual disability and genetics and paved the way for prenatal diagnostics. Since the 1970s, Down syndrome is increasingly prevalent in the United States, while rates have simultaneously declined in Europe. Diagnosing Down syndrome and counselling families remains a tiny part of my job. I’ve rolled stools beside new mothers during repeat C-sections to share what seemed possible. I’ve sat beside families that other doctors didn’t quite know how to approach and disclosed the truth myself. Each time I have these high-stakes conversations, I roll my shoulders back, feel my sternum rise with my inhalations as I beckon reverence into these hospital rooms. I watch parental eyebrows and pupils and fingers clenching or unclenching as I utter measured words and allow conversations to bloom with unbridled parental emotion and exploratory questions.For a long time, I refrained from sharing stories about my cousin because Becky is only one person with a common condition that affects 6 million people differently. I didn’t want to inject her life story into these families’ stories. Bernard Fleishman (Becky's grandpa, left), Becky Fleishman, and Yetta Fleishman (Becky's grandma) at Becky’s bat mitzvah***I was several years into my career as a neonatologist when my grandmother died and I lost my connection to Becky. Becky wasn’t at the funeral. No one quite knew how to tell her what had happened, and taking Becky across the country while everyone was grieving wasn’t feasible. My extended family shared stories of my grandmother. When it was my turn at the podium in that South Florida funeral home, I rambled, crying because I loved her for her freely expressed opinions. I mumbled about seagulls and almost sat down to sob into my husband’s blazer, when, from the depth of my grief, I shared an unscripted sentiment that sounds obvious only in hindsight: “How Granny treated Becky had a profound impact on me as a paediatrician.” I flew home to Philadelphia at peace with my grief-stricken insight. I never thought to call Becky or ask how she’d taken the news about Ede. I mailed holiday cards from Philadelphia to San Diego every December. Some years, she mailed back photos of herself making scratch pizzas and pastries. When I saw Facebook photos of her 40th birthday at Disneyland, I was ecstatic. Mostly, though, Becky and I remained out of touch. And then, three years after my grandmother died, I reconnected with Becky’s mom. Because of divorce and distance, I hadn’t spoken to my Aunt Sylvia since I was a teenager. I was struck, as I listened to her stories about Becky, by how much I missed my cousin.“To this day, Becky will tell you she doesn’t have Down syndrome,” my aunt told me.This didn’t surprise me.“That’s because she was raised to believe she can do anything she wants,” I replied.“The diagnosis was a surprise,” my aunt explained. “The doctors told me lots of stuff that was just wrong.” They didn’t think Becky would breastfeed. They said she wouldn’t lift her head for a long time.I was appalled. I’ve cared for babies with Down syndrome with these challenges. But I’ve also cared for babies who did not have them.“After Becky was born, one of the doctors told us she belonged in an institution.” “Wait, what?!” I hadn’t known that. As a paediatrician, I couldn’t fathom advising parents to give away a child.The little I knew about institutions for disabled people I’d learned from watching Geraldo Rivera’s documentary “Willowbrook: The Last Disgrace,” which came about after a doctor was fired from the Willowbrook Developmental Center because he tried to champion humane care for the 5,230 people who lived there in the early ’70s. The movement to close these institutions was underway when Becky was born.“So, what happened?” I asked.“I called a paediatrician I already knew,” my aunt said — one who’d cared for Becky’s older brother.I was excited, mistakenly believing a paediatrician would be the hero in Becky’s story. The pediatrician told her that children with Down syndrome did not thrive in institutions. If Becky didn’t come home, he suggested adoption as an alternative. “But your grandmother wouldn’t hear of it.” I felt my eyes wrinkle and a flash of warmth. “What did she do?”“She marched into my hospital room,” my aunt recounted. “She said, ‘You’d bring a puppy home to be taken care of — she’s your daughter. You are bringing her home!’”That was my grandmother. A firebrand.My aunt gave me a gift that day. I hadn’t known I’d spent my career manifesting words uttered a year before I was born. I flashed back to countless babies’ bedsides, to families who held their children, desperate for them to get better, survive, go home. Whatever it took, whatever their children needed. What those families craved, all of them, was hope.The author (lower right) FaceTiming with Becky Fleishman (left) and her aunt Sylvia Ginsberg.I began to think more about Becky when parents whose children had Down syndrome asked me about what the world might be like far into the future: “Will she learn to read?” “Will he ever join the football team?” “Will she get a job?” “Will he get married?”A few months after I spoke to my aunt, I cared for a child with Down syndrome who required extra medical care after birth. I sat beside the baby’s crib, talking to his mother.The space behind my sternum opened. I felt close to my grandmother, despite her death, and to Becky, who I never saw. My whole life, I never once heard my grandmother comment about the implications of disability. To label Becky as someone with disabilities felt like labelling the morning sky as a single colour — an overly simplistic categorisation of a nuanced person whose moods and gifts and antics shifted as quickly as the sun rises. She modelled acceptance through her actions — by treating Becky as, simply, herself. That mother’s eyes met mine.“I’ve never met someone with this,” she confided.“Would you like to?” I asked. I told her about Becky, about all she’d accomplished, about how much she was loved. I pulled out my phone and showed her a photo of my cousin in aviator sunglasses and a leather jacket. Beaming. The mother clutched my phone, smiling, as her son opened his eyes. ***As I worked on this essay, I sent a draft to my aunt so she and Becky could weigh in. When my aunt first read it to Becky, Becky smiled the whole time. They were then gracious enough to FaceTime with me so I could ask Becky’s thoughts myself. As my aunt and I reminisced, Becky waved and smiled. Her expressive language is waning (perhaps related to early Alzheimer’s that afflicts some middle-age adults with Down syndrome), but she knew me and was excited to see me. My aunt’s stories about times when people underestimated Becky’s ability to understand everyone around her reminded me that my cousin has always been a prankster. I asked Becky if she remembers the above stories. Hide-and-seek? High school hallways? So much swimming? Yes, she said to each memory I offered. Did she remember Ede? She offered a wide grin. I asked her if I could publish this piece about her. With a serious expression, she again said yes. Any one of us can only be who we are. Who we are, and who we become, is shaped by the people who raised us and the people we know, but also by the people we meet and the people we read about. In the 20 years since I graduated from medical school, the patients I’ve cared for, the families I’ve served, and the mentors who trained me all shaped how I understand this world. They’ve opened my eyes. But I would not have known how to look at this world, to truly see how people move through it, had it not been for how my grandmother treated my cousin. Looking back, their relationship is easily labeled: acceptance, kindness, unconditional love. But, as a child, these things were so ingrained, I never noticed them. My grandmother gifted me an irrefutable understanding that when I am able to love and accept people for exactly who they are, I am the doctor and person I aspire to be.  Note: Names and details of some individuals mentioned in this essay have been changed to protect their privacy.Rachel Fleishman, M.D., is a neonatologist and writer based in Philadelphia. More of her writing can be found on her website www.rachelfleishman.com.Related...'I Chucked My Sister Out Of My Home After Her Money Comment. Was I Wrong?'After I Cut Off Contact From My Mother, I Was Shocked By The Brutal Move My Sisters MadeI Grew Up Thinking My Father Didn't Like Me. It Was Decades Before I Learned The Truth.