Chapter 1: Prep 1 PREP
It should have been enough. Saving lives, children’s lives, should have been enough. For a long time, it was.

One surgery I performed, on a little girl named Grace, took place right in the neonatal intensive care unit (NICU). We couldn’t bring Grace to the operating room, so we brought the operating room to her. Born prematurely at six months, she was just two weeks out in the world. Nothing in her tiny body was ready for surgery. Her entire circulating blood supply would have fit into two shot glasses. Her lungs were fragile as tissue paper, her liver not yet as protected as a full-term newborn’s. She had survived this long thanks to miracles of science and the skill of the NICU doctors and nurses caring for her, but her time on this earth was going to end if something wasn’t done to repair her gut.

When I explained to Grace’s mother what was about to happen, she locked eyes with me. “Take care of my baby,” she said. “Make her better.” Grace’s mom and I were the only Black people present. “I trust you, Dr. Stanford.”

“I will take care of her like my own,” I said. I meant it. I feel it with every child who comes to me for surgery, every body I cut open. For the next however many hours, Grace would be the most important person in the world to me.

Grace’s parents were homeless. That fact likely had something to do with why Grace was born premature. For a mother like Grace’s, there would have been little or no prenatal care, no certainty that she would eat anything close to a proper diet. During the months of Grace’s gestation, her mother lived under the constant strain of homelessness and uncertainty, her body flooded with stress hormones. There was likely no happy preparation of a baby’s nursery, just the shelter where she lived.

Me? I was the doctor, the surgeon with fancy degrees and certificates on my walls reflecting decades of education and career accomplishment. I was well-off, especially by the standards of Grace’s mother.

But she and I had two things in common. We were both Black mothers, and we knew what it was like to need and not have. Beyond that, there wasn’t much I knew about Grace’s mother, her father, their circumstances. There wasn’t much I could know. I didn’t assume they hailed from the same North Philadelphia neighborhood where I was born, though they might have. If it isn’t the toughest collection of blocks in the city, it’s top five. Barely any green grows there. As a girl, I saw chalk outlines where bodies lay. I knew what it was to be raised by a teenaged, single mother doing her best to manage. A mom who worked multiple low-paying jobs and was gone all the time. I followed the march of roaches on the ceiling above my bed, heard rats scampering across our floor, used food stamps, carried an apartment key around my neck. I knew what it was to be sexually abused by family “friends,” with an s, and didn’t understand why it had happened to me. I knew what it was to be poor and Black in America, and to see adults look me over and drop their eyes and expectations for what I could become. I, too, was once invisible.

It never leaves you, this knowledge. Not ever. No matter how much money I’ve made, how many degrees and accolades I’ve collected, how thriving my life: I’ll always know what it feels like to need, and to be born into a situation over which you have no control.

When I looked at Grace’s mother before I entered the NICU, I saw myself in an alternate universe. Moments later there was no mental space for such ruminating. I rehearsed as I scrubbed. In my mind I saw each operative movement, reviewed each tool of my trade, considered each contingency. I prayed, as I do before every surgery. God, protect this child. Guide my hands and my mind. Thank you for the privilege of this gift.

Honestly, it was a miracle Grace had made it this far. We knew something was wrong with her, but didn’t know exactly what. A child that premature can’t be moved to sophisticated imaging machines. But every time the NICU fed her a drop or two of breast milk, her belly distended. Her platelets, the blood cells that help clotting, decreased. Her stool turned bloody and her heart rate slowed. Only the tubes inserted into and coming out of every orifice of her tiny body managed to provide any nutrition and water, and to eliminate her waste. If we let this go on much longer, Grace would bleed into her brain, or her lungs would be damaged. Or both.

Yet there were arguments for waiting. Operating on such a tiny body is risky; you can’t afford to lose much blood when you have only two ounces to begin with. Any stray cut, any too-aggressive nudge with my fingers, could tear her liver; any rogue infectious germ could kill her. Maybe, with time, whatever was creating Grace’s symptoms would resolve itself. Perhaps she’d gain a little strength and we could operate later.

Every surgeon walks an agonizing line between thinking the solution to every problem is a surgery—it isn’t—and being afraid to operate. Surgeons are sometimes accused of having “God complexes.” Some do. That can lead to problems. But a good surgeon must be confident and decisive. She can’t hesitate. Once she believes in the path, she must move. Skittishness can cost lives just as easily as hubris.

We chose our path. The team and I gathered around this tiny human being, surrounded by equipment on trays and carts, all of us draped in gowns and masks and gloves, me with my headlamp to better illuminate Grace’s organs. Aliquots of blood were stored within easy reach. There’d be no time to run to the blood bank if needed.

For a beat or two, the team around Grace was silent but for the hiss of an oscillator pushing air into her tiny lungs, quaking her body with every pump. The violence of forced air can damage such tender lungs, but there was no other option.

“Knife,” I said, and the nurse handed me a scalpel with a number 15 blade, a short, curved cutting edge ideal for small incisions. I sliced into Grace’s abdomen one finger breadth above her umbilicus—her belly button.

Opening her abdomen, I saw murky brown fluid. Old blood, perhaps mixed with stool. Her intestine was maroon-colored and matted, of questionable viability. Something had happened inside her little belly, and her body had sealed off the dysfunctional parts and let them die.

As gently as possible, I searched Grace’s abdominal cavity for pink, living tissue. I found some: a fragment of intestine rested adjacent to the right lobe of her liver, glistening and happy. I had to be careful not to damage her liver, which was already taut and full. Time was running out. The longer the surgery, the more fluid would accumulate in the liver.

Grace’s bowel, however, was bonded to other gut organs. I couldn’t free it without performing lysis of adhesions, a technique to cut away scar tissue that can bridge space between organs and bind them together. Twenty minutes ticked away as I worked, the hissing oscillator shaking Grace’s little body. All the while, more fluid accumulated in her liver.

At last, I managed to free up her bowel, and to palpate the orogastric tube that the NICU had placed in her stomach. I ran my fingers from the tube through her bowel to look for disease. I found it in the jejunum, the middle section of the small intestine. It appeared tan, infected, stuck to the liver. The jejunum was “friable”: It easily disintegrated, like wet tissue when touched. That part of Grace’s bowel had died. I had no choice but to leave it there and look for other perforations or disease that had led Grace’s immune system to wall off and sacrifice this part of her bowel.

As I searched for the root cause of the damage, I found other sections of the bowel, between Grace’s stomach and appendix, that were also dead or dying. But some were viable. The operation became one of cutting and assessing the still living sections, removing as much dead tissue as possible, and sewing the remaining living sections back together into one contiguous, though shortened, bowel. I would have to remove her appendix and create an ileostomy, all without losing much of her minimal blood supply.

I let out a sigh at the prospect. This was a lot to ask of the body of a baby who’d been growing for just twenty-six weeks.

I began. Every move, every cut, every stitch, every knot had to be just right. There was no time for second chances or do-overs. The team of nurses, the NICU doc, the respiratory therapists, and I all worked in harmony, our hands and minds singularly focused on saving Grace, step by careful step.

I could not tell you how long this all took. Too long, I thought at the time. Yet Grace’s vital signs remained stable. She was a tough girl.

Finally, I created an ileostomy, a passage for stool to leave the body. Too tight and it would block waste; too loose and it would prolapse, or retreat, into the abdomen. The abdominal incision also had to be just right—if I made it too tight, I would wind up creating abdominal compartment syndrome, a condition where the body has difficulty ventilating the lungs fully. I’d suffocate Grace.

There is a moment when the surgeon places the final sutures in an incision at the end of an operation and allows her mind to review what she’s just done. Did I forget anything? Did I do the best I could for my patient? Was my technique the best it could be? Was my inspection thorough? Is my instrument count correct?

And sometimes, as you finish up, you also wonder if what you’ve done could ever be enough. As I placed the final stitch to close Grace’s small body, I took such a moment. I was amazed at how well she’d tolerated my rooting around inside her. She seemed determined, almost willful. Grace’s mother had reminded me a little of myself, and now Grace did, too.

She’d survived the surgery, but she lived without guarantee. More trials stood in her way. The twenty-four- to forty-eight-hour period that followed would be only the first. She would have to withstand constant monitoring by nurses and respiratory therapists. If she scaled that barrier, she would require a long recovery, time to grow and gain strength, then more surgery to reverse the stoma, allowing her to poop through her anus instead of her abdominal wall.

But even if she demolished all those obstacles, even if little Grace made it through all that… where would she go? Would she and her mother continue to live in a shelter or couch surf? What kind of environment was that for a premature infant with an ileostomy that required close monitoring so she didn’t become dehydrated, infected, or malnourished?

I could employ my decades of training and experience, and the others who aided me could use their years of training and expertise, and together we could draw on the accumulated knowledge of a thousand years of medicine, using the latest, most miraculous modern technology to keep Grace alive. But we could not cure the deeper diseases that plagued her and her mother and so many others: injustice, inequality, indifference. And the root cause of these, in so many cases, is one factor.

The color of your skin.

For so long, for so many people, so many of them Black or other persons of color, many of them poor—but not always, not by a long shot—American health care has been a land of broken promises. Or worse.

The Tuskegee syphilis experiment is probably the most notorious example of medical science abusing Black Americans—though relatively few people realize that it ran through 1972—but it hardly stands alone. Louisiana’s charity hospitals, the only places Black people there could go for medical care until 1965, were often glorified holding pens for “experimental material”—that is, human beings. Holmesburg Prison, outside my hometown of Philadelphia, was also a source for human experimental subjects, mostly Black, as were prisons all over the country. Henrietta Lacks’s cells could be harvested and cultured without a second thought—never mind consent or compensationI—because she was a poor Black woman. In 1946, the Hill-Burton Act was passed to help finance the construction of new hospitals and the repair of older ones, but the law decreed segregated facilities, meaning that well into the 1960s the nation’s African Americans could not access hospitals that their tax dollars had paid for.

In 1896, Frederick Ludwig Hoffman, a man who influenced a century of thought about health and insurance, wrote Race Traits and Tendencies of the American Negro, a landmark of pseudoscientific racism. Negroes, he wrote, were healthy during slavery, but since emancipation had declined due to personal failings like laziness, sexual immorality, and criminality. By Hoffman’s account, Black people lacked what many modern-day conservatives would call “personal responsibility.” This attitude is still reflected in much of American medicine and public health: If people are sick, it’s their fault. Just like—to take one of countless examples—it was the fault of the people of Flint, Michigan, a majority-Black city, when their water supply was contaminated by lead in 2014, a crisis that lasted a half-decade and exposed thousands of children, Black, brown, and white, to high levels of lead. “Flint has the same problems as Detroit,” said one Flint public official, who then denounced Black people (using a revolting slur) for not paying their bills, as if that explained the dangerous levels of lead, and the city’s horrifying, life-threatening indifference to addressing the problem.1

There are reasons why white people born in 1960 can expect to live, on average, seven years longer than Blacks born the same year,2 just as there are reasons why Covid-19 shortened Black life expectancy by an astonishing four years between 2019 and 2021 (2.4 years for whites)3, and none of these reasons has anything to do with personal responsibility. They are the same reasons surgical outcomes for healthy Black children are worse than those for healthy white children even when the surgery takes place in the same hospital, for the same condition.4

Health care is not apportioned equally in America, and health disparities prove it. Black and brown people have far higher rates of infant mortality. Far higher rates of childhood asthma, and death from it. Higher rates of diabetes, heart disease, and hypertension. Your status in life is predetermined from the moment you are born, perhaps even before that, because where you live, your zip code, which is largely determined by your race, more or less predicts the quality of health care you will receive over the course of your life. Can you imagine your access to lifesaving health care being dependent on your zip code? Your parent’s or spouse’s or sibling’s or child’s access? For most of the Black people with whom I grew up, those are not shocking questions.

Almost every African American knows, from experience, the fact of systemic inequity and the broken promise of health care. They’ve heard family stories of being turned away from hospitals, of doctors not wanting to see them if they’re on Medicaid, of being treated with rudeness, of being dismissed and disbelieved—or they’ve experienced such indignities themselves. For many, hospitals are the place you go to die. African Americans distrust American medicine for good reason: Our health care system has been untrustworthy. And that’s true not just for those on the lowest socioeconomic rungs. Even rich, educated African Americans face this mistreatment.

In November 2020, nearly a year into a global pandemic that put a spotlight on the entrenched health care inequities in the United States (and around the world), the American Medical Association finally classified racism as a “public health threat.” My reaction: What took you guys so long?

In my home city of Philadelphia and across the nation, the Covid-19 pandemic provided the most unmistakable example yet of hospitals, political leaders, and many civic organizations either failing to consider the needs of the Black community or choosing to neglect those needs. Throughout the pandemic, we saw the racism of low expectations. In Ohio, a state legislator, a doctor, suggested that infection rates were higher among Blacks because they didn’t wash their hands thoroughly. In Florida, an official blamed the state’s high infection rate on the failure of Black people to be vaccinated—the old “personal responsibility” canard. African Americans, the tired story went, were worsening a public health crisis because they were careless and ignorant. Similar charges were leveled against Hispanic meatpacking workers and low-income white warehouse workers.

Such attitudes reflect the ignorance of leadership. Why were so many more Black people unable to get tested than whites? Supply chain issues and test shortages affected almost all of us. Still, in and around Philadelphia, there was six times more testing in affluent, white-dominant zip codes than in poor, Black-dominant zip codes5. A disproportionate number of Black people work nights, or double shifts, or two jobs. Many are less likely to work from home or have the flexibility to take time off, even if only an hour or two, without losing pay. That made it difficult for folks to appear for a test at an appointed time, between nine and five, Monday through Friday. Yet appointments during those times were often required, and often made electronically, so the digital divide favored certain people over others. Even if you found a weekend location, you often needed a referral or script, especially early in the pandemic. Many people did not have a regular doctor (for reasons laid out above), hence no one to write a script for testing. Many people of color were turned away from hospitals—except emergency rooms, where by law they have to take you in extremis. It was not just a question of class and wealth: I knew of many friends of friends, Black people of means, with insurance, good insurance, who needed a test and guidance, and who were turned away from hospitals. I knew of them because they called me, seeking help, intervention, something. Many Covid-19 testing sites in Philadelphia and America were initially at hospitals, not churches or barber shops or community centers.

Some of these barriers to patient health would crumble if the bias were demolished. I am the first Black woman pediatric surgeon trained entirely in the United States. (Dr. Andrea Hayes Dixon is the first Black woman trained in North America; for many years we were the only TWO Black women pediatric surgeons in America.) I am a rare species. Only 5.7 percent of medical doctors in the United States are Black.6 There are only about 1,600 Black women doctors in the U.S., period, and very, very few of us are surgeons. Of approximately 15,700 surgical faculty teaching in American medical schools, roughly 125 are Black women, less than eight-tenths of one percent.7

Do these statistics matter? Absolutely—though I’m chagrined and maybe a little disgusted to admit that until recently even I didn’t fully grasp just how much they matter. In the spring of 2020, while I was working at a Covid-19 testing site, an older Black woman walked over to our area. We assumed she was there to be tested. “I heard there was a Black doctor here,” she said, inspecting me up and down. “I’ve never laid eyes on one and wanted to see if it was true.” I was a unicorn.

There is a long history of second-class treatment of Black people in this country, of regarding Blacks like Ralph Ellison’s Invisible Man. We have to be seen. The presence of more African American physicians will help to cultivate understanding and upend assumptions.

I am as angry and frustrated as anyone by the inequity in health care and health outcomes. When I’ve given presentations on the issue—first, as the director for Minority Health and Health Disparities at Temple University’s Lewis Katz School of Medicine; then, as founder of the Black Doctors COVID-19 Consortium during the pandemic; later, appointed by President Biden as the regional director (Mid-Atlantic, Region 3) of the Office of Intergovernmental and External Affairs for the U.S. Department of Health and Human Services (please don’t be intimidated by the title)—I regularly challenged the clinicians and government officials seated before me to ask themselves: What might we be doing to contribute to these disparities? What could we be doing instead?

There’s no shielding our eyes from this. Such unequal treatment ultimately hurts us all—though, of course, some much worse than others. We can’t look at the fact of health inequity and simply throw up our hands in helplessness, as if it’s beyond fixing.

The poor have always been with us, goes the saying. Those words make it easier to shrug our shoulders as we walk by the beggar in the street. They make it easier to overlook the role of race, too.

But it isn’t just poor and working-class African Americans who are subjected to inferior care, who have their needs and complaints dismissed. Growing numbers of Americans have begun to feel that they don’t really matter. Far too many don’t expect attention and caring, so they don’t look for it. They’re on their own. They’re disposable. Black people have been plagued by this feeling for centuries. For others, it’s a newer experience. The United States spends way more on health care, and gets far less in return, than any other wealthy nation. And we rank dead last among our peer countries in overall health care and health outcomes.8

What would health equity in America look like? First of all, what is it? Health equity (as defined by the U.S. HRSA Office on Health Equity) is the absence of disparities or avoidable differences in health outcomes, such as disease, disability, and mortality, among people from different demographic groups—racial, socioeconomic, geographic, gender. What’s the path forward to eliminating disparities in health care and health outcomes in the U.S.?

In the ensuing chapters, I recount my personal and professional story, which I believe illustrates some of the root causes of inequity. You will view the unfurling of my life as a young student who yearned to be a healer, a doctor, a surgeon, then watch things eventually take an ugly turn as Covid-19 overtook the world, America, and my beloved hometown. At the end of the book, I will share my recommendations for actions to address and eventually eliminate many of these health care inequities, because nothing is achieved unless we act, which also means ceasing to do the things we’ve been doing for so long that have clearly failed. When creating public health programs and policies, our leaders must consider how people live their lives, and where and why they live them the way they do. For example, the catastrophic impact of “redlining” on Black Americans is still felt, almost a century later. In the post-Depression, New Deal era of the 1930s, the United States government created homeownership programs to offer favorable mortgages. Over time, maps were drawn to show the loanworthiness of neighborhoods all over the country; red meant the least desirable, riskiest areas—almost always Black-dominant. By stigmatizing these areas, by considering investment in them to be dangerous, by refusing services to people who called them home: All of that and more erected a ceiling that blocked access, resources, and overall care. This is true for all communities of need, not just Black ones. The crisis in rural health is an example of a similar dynamic. Policies must be created for the specific community they aim to serve, not on the basis of the lived experience of the policymakers.

Broken as our system revealed itself to be during Covid, we have a genuine opportunity to make positive, generational change. For all that I experienced during my own personal and professional journey, I feel as if everything I endured prepared me for a role in delivering on a promise, one yet to be kept. My hardships led to perseverance. The stacked odds led to determination. The disappointments led to resourcefulness. I had confidence as a pediatric surgeon, as I helped one child and another and another, yet I felt even more confidence—and hope—as the amazing team I recruited during the pandemic found ways to touch hundreds of lives every day, and the cumulative number grew to the thousands, then tens of thousands, then hundreds of thousands. And counting.

The most important gift we possess is a shared belief that change is possible, that bad can be transformed into good. Grace, the tiny little girl born at twenty-four weeks, just two weeks new to this world, survived that first operation. Five months later I performed a second one on her, to reverse her stoma, and she handled that one beautifully, too. I took care of her like my own. I’m thrilled to report that within the year her parents secured housing for the family.

About a year after that second operation, the world turned upside down. I felt called by the people in my community to take care of them like my own.

My dream? To reach the point where there truly is no difference between “my” and “their.”

1. I. A financial settlement with her descendants was reached in the summer of 2023, seventy years after the fact.