OPINION: The Legacy of Seattle Children's: Khabir Rasaan

by Sakara Remmu

"We provide hope, care and cures to help every child live the healthiest and most fulfilling life possible." —Seattle Children's Hospital mission statement

Every hospital, including Seattle Children's, has one: a policy against obstruction of patient care.

Seventeen years ago, Children's policy was a single page, with bullet points outlining violent and intimidating behavior against hospital employees by patients' family members or friends.

The policy is a warning: our institution has the power to remove and ban you from this hospital if we feel your behavior interferes with our care. The document requires a signature of acknowledgement, which the hospital can use to invoke internal security or external police, child welfare, and the court system. The message was clear: you are here receiving life-saving — or not — care. On their terms.

In 2003, my 2-year-old son Khabir was dying of cancer at Seattle Children's Hospital.

The night he received his first chemotherapy treatment, I sat in a rocking chair, holding his swollen, tender body, tears streaming down my face. How did we get here? How did this happen to my baby, the youngest of my three children?

I was in my early twenties and a single parent. Thinking back, where were my other two children that night? Was it my brother, Andrew, who picked them up from school or my Aunt, Sunni? I don't remember.

Two nurses came in and began the protocol for administering the drugs that hung in an IV bag. Khabir had already had surgery to place a port in his chest, a tubed gateway for the treatment to enter and attack his body in the hopes of killing the mass that had consumed his entire abdomen. I could not stop the tears.

Neither nurse spoke to me. No introduction. There was no explanation of what they were doing. They spoke only to each other. It was as if I wasn't in the room, in the rocking chair, holding my son. When the nurses finished their protocols, they connected the IV to the port, opened the valve, and the chemo flowed.

The following morning began in disoriented panic. The door opened and I heard a voice I vaguely recognized among all those that now permeated my existence. It was the hospital social worker. I awoke to the urgency in her voice and saw the seriousness in her eyes. I immediately looked to Khabir, who slept in the hospital's version of a medically safe crib, surrounded by metal bars taller than he could stand on his toes. As I sat up in my corner cot, she hurried in, grabbed a chair, and sat in front of me.

In a cold, admonishing tone, she said that we needed to discuss what had happened the night before.

Her eyes cast down to the stack of papers and folders in her lap. She lifted one, and handed it to me: the Children's Hospital Policy on Obstructing Patient Care.

I skimmed the page.

Bringing weapons to the hospital is not allowed.

Threatening hospital staff is not allowed.

Causing bodily harm to doctors or nurses is not allowed.

I looked up at her confused. She took the paper back, wrote on the bottom of the page, and handed it to me a second time. I don't remember the exact words, I just remember the helplessness I felt as she explained to me that my tears had made the nurses uncomfortable to the point they didn't feel safe being in Khabir's room. Anyone who violated these so-called safety policies could be banned from the hospital. Seattle Children's could get a restraining order against me.

Because of my tears.

In late 2020, Dr. Benjamin Danielson — a renowned pediatrician and Khabir's primary care doctor — resigned from Seattle Children's Hospital and Odessa Brown Children's Clinic. He stepped down in protest of the systemic racism he had witnessed and experienced over the course of nearly 25 years. Seattle Children's has hired former U.S. Attorney General Eric Holder to investigate what Dr. Danielson saw and experienced.

When Dr. Danielson resigned, I decided I had to tell Khabir's story and mine. Seattle Children's Hospital might argue that I am breaching a non-disclosure agreement I signed after Khabir died at Children's in 2005.

He was not yet 4 years old.

Parents, patients, and professionals have suffered because of the racism and white supremacy that Seattle Children's has refused to confront.

The investigation into racism at Seattle Children's cannot be done with the sterility of an operating room. This is not about the technical, legal term "illegal discrimination." This is about incompetent care influenced by internalized bias. Influenced, more specifically, by white supremacy.

People have died. Children have died.

Their stories — our stories — must be front and center in any investigation into what has happened and why at Seattle Children's.

Khabir Rasaan was born October 6, 2001. I gave birth to him in water at a birthing center, assisted by his brother and sister, my parents, his father, and the only licensed Black midwife in the state of Washington at the time, Michelle Sarju.

Shortly after he was born, I felt Khabir's breathing was different somehow. His heart rate seemed more urgent. It wasn't that he was in distress, but, as they say, a mother knows. Michelle listened. Ben listened. And off to the emergency room of Seattle Children's Michelle and I went.

They looked Khabir over. He seemed to be fine. His heart rate was perhaps higher but not outside of the norm, but most important, his oxygen saturation was good. Still, I persisted. Sure enough, an ER doctor detected muffled breath sounds. Had a lung collapsed?

They X-rayed his chest; the lung wasn't collapsed, but it was smaller than the other, leaving space for his heart to shift into the void.

The condition could cause complications — or not. Interventions may be needed in the future — or not.

Satisfied he was otherwise healthy, we went home. Life went on. I went back to working an hourly part-time job when Khabir was about 5 months old, and he went to daycare with his big brother as their sister started another year of elementary school. He slept in my bed most nights, curling on his side, the soles of his warm feet and toes pressed against my stomach.

Khabir was a little battle ram of love and personality. First word: no. Second word: no-no-no-no. Third word: mommy.

Khabir had one normal year of life. But shortly after his first birthday, again, it was evident something was wrong. His body and his personality began to change. He seemed sad and tired. After learning to walk and thriving in that independence (and mischievousness), he wanted to be carried more often than not.

Bathing him, changing him, dressing him, I could see the shape of his abdomen begin to swell on one side.

Rightfully panicked, I took him to see Dr. Danielson. After examining Khabir and carefully explaining his concerns, Dr. Danielson canceled the rest of his clinic appointments and told me he would meet me at the emergency room at Children's.

I had my first child when I was 17. She came out plump, ready to eat, and suckling on her fist. What on earth had I gotten myself into?

I birthed my daughter at Swedish hospital. My doctor, the nurses on staff — all were great in helping me through an intense induction and labor. After a well-deserved epidural, I awoke from a nap to her crowning. My dad helped me push.

When I transitioned to recovering, I was eventually assigned a new nurse. She was white, the same generation as my grandmother. She knocked briskly at the hospital door, came in, snatched the curtain back, and looked at me. Sighing, her eyes found the ceiling before falling back to me in a sharpened glare.

"Have you fed your baby yet?" she asked. "You're not leaving here until you can prove to me that you know how to do it the right way."

What on earth had I gotten myself into?

Like many babies, not long after she came into the world, my daughter was diagnosed with jaundice. I don't remember how many rounds of treatment she needed to recover, I only remember the first.

My mother took her granddaughter and me to the hospital. When we checked into the appointment, the receptionist turned to my mom. "Name of patient," she asked cheerfully.

"Um," my mom said, pointing to me, "she is the parent."

The woman's eyes shifted to me. "Oh."

This repeated throughout the day. When the nurse came in to check vitals. When the techs came in to explain the procedure. When the doctor breezed by to provide the necessary five-minute consultation and signature to begin treatment.

Young, Black, single, and a high school drop-out. I was invisible.

Twenty-five years ago there were not enough Black pediatricians. That is still true today. If you called the Odessa Brown Children's Clinic and asked for Dr. Danielson to be the primary care physician for your children as a new patient, you could expect to wait weeks or months for an opening in his schedule.

I remember the first time I brought my oldest child to Odessa Brown and the first time I met Dr. Danielson.

"Wow," he said looking at my daughter, "that's a happy baby." His eyes turned to me. "You must be Mom."

He saw me.

Nearly eight years later, a young, white medical student was assigned to evaluate Khabir in the emergency room.

Even though Dr. Danielson was on staff at Children's and had come to the hospital, following traditional hospital protocol, the decisions were now out of the hands of the medical professional who knew the patient best.

Ben had braced me before leaving the clinic for the emergency room. The bulge that stretched from Khabir's ribs to his pelvis was likely a tumor, likely cancerous, and likely deadly. Scans of his body were needed immediately to confirm.

After hours of hand-wringing in the ER, the young student appeared triumphantly at the door and announced a diagnosis.

"It's probably the spleen," she said and handed me a prescription for iron. "I spent a few months in Africa — it was very common there."

I could only blink. Khabir was Black, yes, but how many generations removed? What on earth was she talking about? She had seen it in Africa but not once in a world-renowned full-care medical institution for children?

I pressed for imaging X-ray, ultrasound, MRI. I was desperate for them to do more.

She shook her head and interrupted me. "I know you got a good scare today, but you have to rely on doctors that know what they're talking about. It's not cancer. Khabir will be fine. You can go home."

It wouldn't be until much later that I would learn what Ben went through that day with his colleagues and superiors at the hospital to try and save his patient.

Because he was a Black man, with polite smiles, Children's Hospital ignored and belittled him.

The white doctors in the room reminded Ben of his station: he was not an oncologist. A better authority had said it wasn't cancer. Ben's assessment as Khabir's primary care physician was so easily and summarily dismissible that diagnostic testing would not even be required to confirm the white doctors' superior experience.

"Do you know how much it would cost this hospital if we took an image every time a kid came in here with a bump?" they asked.

Khabir was fully insured.

The proper testing would have cost the hospital nothing.

Dr. Danielson was the only one who had the diagnosis right.

But the culture at Seattle Children's forced us to uphold the incorrect assessment of a white medical student instead.

Days. Weeks. Months passed. Khabir was deteriorating physically, and he was in excruciating pain. He cried all the time.

The student doctor said the prescription would take time to have any effect. Be patient. The problem will go away.

Again, I took him to his pediatrician. Again, Dr. Danielson canceled the rest of his day and sent us to the emergency room at Children's.

My baby was dying. I could feel it in my soul.

The day Seattle Children's confirmed what Dr. Danielson and I already knew, it was too late. Neuroblastoma. Stage 4. Chance of survival: 18%.

One night, Dr. Danielson came by to visit. He told me he had seen Khabir's scans and asked if anyone had offered to show me the MRI. I told him no. One of the oncologists had drawn a sloppy picture of an abdomen on a piece of paper, with various circles for organs.

He asked me if I wanted to see them, and I said yes.

It was very late. The hospital was closed for the day. I remember wearing fuzzy socks. He took me through the hospital to radiology and brought up the scans. He explained how the radiology machine works and oriented me to Khabir's body starting from the neck and moving down. Heart, lungs, intestines.

Different images were brought up on screen. Dr. Danielson pointed along the rim to little blobs. The spleen, a kidney. My eyes searched for the tumor, having no idea what I was looking for. All I could see was a huge void, like depictions of a black hole. He circled it with his index finger.

"That is the tumor."

It filled Khabir's entire abdomen and then some, dangerously crushing his other kidney. Surgery was too risky, the oncologists had said. The tumor was now too big.

It would take months of aggressive chemotherapy, radiation, and other treatments first, before surgery could be considered.

Fifty-six weeks of treatment, the majority of which would be inpatient care, for weeks or months at a time.

Nursing schools in Seattle and the state of Washington used to only admit white women. Eventually, Black women who obtained their nursing degrees in Texas and other states broke that ceiling. But nursing schools in Seattle still did not admit Black women.

Khabir is the great-grandson of Francis Terry, who along with three other Black women, integrated nursing schools and went on to integrate the profession of nursing in every hospital in Seattle. Francis Terry's husband, my grandfather Robert Terry, was the first Black man to teach in Seattle Public Schools. He died not long ago. She still lives in the home they shared for the majority of all of our lives.

I saw many Black and Brown faces at Children's. And Seattle Cancer Care Alliance and the University of Washington Medical Center. Those were the people who delivered our food.

Cleaned our room. Took out the garbage or pushed the wheelchair. Black and Brown medical professionals in influential or lead care positions were non-existent. There was no trust. No relationship. Only the exchange of information.

Late in his first year of treatment, Khabir underwent a stem cell transplant, using his own cells. One of the many side effects is the tissue inside the mouth and throat peels off. This presents a choking hazard, and the patient requires someone at the bedside 24 hours a day to make sure the airway doesn't become blocked.

Children's Hospital didn't provide individual nurses to patients outside of the ICU, and they weren't about to start simply because I was a single parent. Instead, they told me that if something were to happen to him and I was not at the hospital at his bedside, it would be my fault.

Given the hospital policy that a parent be at the bedside, Seattle Children's suggested foster care for Khabir's brother and sister.

I spent every moment I possibly could in the hospital with Khabir. I was his mother. Nothing can replace that, as any parent of a child in crisis will tell you.

How can people who pledge to devote every resource to care for sick children tell me that if my child dies in their hospital, it's my fault for not being there to push a call button?

Every week, generations of my family met with the hospital to address Khabir's medical care and address the hospital's ongoing, anti-Black racist behavior. The scale and scope varied. Hospital staff continuously, mistakenly fed Khabir pork but refused to label food so I could make sure that wouldn't happen. When I would ask to consult with a doctor about Khabir, a security staffer would be quietly positioned outside the hospital room. I could go on.

Eventually, others were called in. Consultants. Advocates. Lawyers.

Internal investigations took place.

While trying to fight cancer, we became de facto anti-racism educators for a hospital that seemingly was clueless on these issues. Eventually, however, after months of having the mirror held up to them in these meetings, Seattle Children's head of social work told me, "We have an internal racism problem, and we know it."

What makes white supremacy hard to combat in the Pacific Northwest, in particular, is often how subtle it is.

When Dr. Danielson sent my son to the emergency room and then went there himself, it was because his training and experience as a doctor told him his patient had a tumor. When the hospital dismissed the possibility and Dr. Danielson attempted to advocate for his patient, the response he received from his colleagues was subtly dismissive.

Racism done subtly is often even harder to combat.

Not long after Khabir was finally admitted for treatment, in a moment of candor, Dr. Danielson confessed to a family member that he felt his own "internalized racism" caused him to falter in his advocacy for Khabir. In the face of white oncologists and others very politely and confidently telling him that he didn't know what he was talking about, he himself quickly questioned what he felt was his patient's true condition.

Dr. Danielson knew the student's suggestion that Khabir suffered from some exotic disease was absurd.

But he forced himself to go against his own training, experience, and gut. Because white doctors told him those things weren't enough.

It is something he and I never discussed afterward and something I was silently conflicted about for years. Had he failed Khabir? Me? My other kids? Should I be angry? Should I not trust him?

Author bell hooks explains in Talking Back: Thinking Feminist, Thinking Black that white supremacy is a much more useful term than internalized racism for understanding the complicity of People of Color in upholding and maintaining racial hierarchies that do not involve force.

I believe that what Dr. Danielson experienced — and Seattle Children's promotes in its staffing and care — was not a negative attitude toward Blackness. It was, and is, a culture that forces Black people to embody the values of white supremacy.

In the post-civil rights era, the deepest harm perpetuated by white supremacy does not involve tiki torches, "very fine people," or white nationalists storming the U.S. Capitol.

No, it is this: Without our consent, Black people have been chained to the standards of whiteness rather than having agency and power to define our own standards of excellence, and yes, of Black excellence.

What happened to Khabir, and to our family, and to countless others was not the fault of Dr. Danielson. Khabir's ashes and the trauma that remains from the treatment we received rest solely at the feet of Seattle Children's.

Khabir's legacy, however, is ours.

And that is why no other hospital staff were allowed in the room the last time that Dr. Danielson canceled his appointments at the clinic and came to the hospital. He rested the palm of his hand on Khabir's head and said, "Sweet boy … I wish you peace." He marked the time and quietly left to fill out the death certificate.

Khabir died at Seattle Children's on June 14, 2005, two days before his older brother's birthday, surrounded by family.

But the harsh reality is, Khabir didn't have to die when he did. He survived over a year of excruciating treatment, and for a short time, was in remission.

The return of cancer was discovered in a routine checkup. I remember the doctors coming into a small room; members of my family were there — and Dr. Danielson. The oncologists explained the cancer had returned and options for continued care. Advances in medicine are made every day around the world, and who's to say the same couldn't happen in this case?

Doctors said they could try to manage the cancer for as long as possible — that they could keep him comfortable.

Or … there was another option. Letting him go. Death.

When they finished speaking, they left the room. No sooner had the door closed, I broke down. "I can't do this here," I said, "I can't go through this again."

I wasn't talking about cancer.

I was talking about the unrelenting racism that suffocated our entire family. The rage and sorrow — the helplessness in the room — was palpable. We, his family, had done everything we were supposed to do. And Khabir would still die, despite generations of his family who were desperate to save his life.

Death didn't happen overnight. It took its time, rendering him disfigured, going blind and deaf.

At least once a year, Seattle Children's fundraises in partnership with local grocery stores; when you check out the cashier asks, "Would you like to donate a dollar to Seattle Children's Hospital?"

Before Khabir died, I used to give that donation without a thought. But for the past 16 years, that question reminds me that before Khabir started treatment, I had to sign a mountain of paperwork, some of which gave researchers permission to take "tissue samples" and keep them for research purposes.

For 16 years, when the cashier asks that question, I say, "No."

Seattle Children's still has Khabir's tissue.

Seattle Children's still has pieces of my son.

Any advances they make to cure pediatric cancers will not come from my dollar.

They will come because Khabir lived.

And died.

Sakara Remmu is the granddaughter of Robert and Francis Terry. She is former chair of Black Lives Matter Seattle-King County and lead strategist for the Washington Black Lives Matter Alliance.

Featured image courtesy of Sakara Remmu.

This essay, with photos, is also available atkhabirremmu.com.