hen I meet Darice Oxendine in her home, she holds two small shoes in her palms. The sneakers are white, rimmed in zebra print, the inside bright pink. I think of Hemingway’s one-line poem: “For sale: baby shoes, never worn.”

 

But these shoes have been worn. The toes are scuffed, and one of the white laces knotted into a large bow has a stain. I don’t know if it’s coincidence, but Darice is wearing nail polish that matches: white and bright pink.

 

“These were her shoes,” she says.

I enter Robeson County, North Carolina, by a two-lane highway. Longleaf pines rise like matchsticks from the wetlands. Billboards read: “Fireworks — Jams!,” “Short Men’s Clothing,” “Waffles and Wifi.”

 

By means of North Chicken Road, I cross Moss Neck Swamp and stop for coffee. It’s May, late spring and the heat is heavy at daybreak. People here are quick to say hello and ask you where you’re from.

 

Railroad bells break the morning quiet, and a great, long train thunders across old tracks. When the last caboose marks the end, a litter of kittens crawls out from a storm drain. One holds a blackbird wing in its mouth. The mother, at a distance, boney-legged and crouching, watches me with silent green eyes.

 

About 90 miles northwest from the Atlantic Ocean, is Pembroke. Population: 3,009. It’s the cultural center of the Lumbee Tribe, which claims more than 55,000 members.

 
 

 
 

The Oxendines, along with 88.9 percent of the population of Pembroke, belong to the tribe. As one local tells me, “Honey, there are as many Oxendines in Pembroke as there are catfish.”

 

In 2013, Darice and Keith Oxendine’s 16-month-old daughter, Reegan, was life-flighted from Scotland Memorial Hospital to the Pediatric Intensive Care Unit at UNC Chapel Hill. She’d suffered complications from a misdiagnosis, despite having been symptomatic for three months prior.

 
 

By the time she arrived at UNC and was properly diagnosed, it was too late. The excess sugar in her blood had damaged her vital organs beyond repair.

 

The official cause of death: Type 1 diabetes.

 

I’ve come to Robeson County to tell a story — I’ve come to understand how a previously healthy child died of a treatable disease.

 

I visit Darice at Deep Branch Elementary School, where she’s a 5th grade science teacher. Her old book bag rests at her desk — a reminder, she tells me, that she was, and still is, a student. Darice completed a Master’s degree in Technology and Education from UNC-Pembroke the year her second child, Reegan, was born.

 

She shows me a book, bigger than a Bible. Its pages teem with diagrams on ecological systems, biomes and the principles of physics. On the wall is the weather cycle — cotton balls for clouds and colored yarn for water movement.

 

At the start of the school year, Darice gives a PowerPoint presentation where the children have to guess if the statements she makes about herself are true or false. One statement: that she got a law passed.

 

“Most think it’s false,” says Darice. “Then I explain to them about Reegan’s Rule and how we fought to get that passed. Of course their little faces get so sad when they realize Ms. Darice lost a baby.”

 

Reegan’s Rule encourages pediatricians to teach the symptoms of Type 1 diabetes to parents of children ages 1-6. Although it doesn’t mandate testing as it was originally intended to, the diabetes legislation is the first of its kind.

“It’s all about awareness,” Darice says. “I told [my students] that she had diabetes, and we didn’t know it. If they’d tested her at 1 year old, we would have realized it. I guess that’s just the most frustrating part of all of this,” she adds, “knowing it could’ve been avoided.”

 

She looks at the clock; it’s time for the children to change rooms.

 

“It could have been so simple,” she says.

 

“Just a blood sugar test. She didn’t have to die.”

 

 

 

 

“That baby loved to dance.”

 

Miss Libby lives down the road from the Oxendines. She’s had a daycare for 23 years in her home. Her yard is full of toys: tricycles, balls and chalk. Inside are several cradles and high chairs. On the playroom door is the alphabet and numbers 1 through 10. There’s a piano at the entry and a china cabinet filled with angel figurines.

 

Darice graduated with Miss Libby’s daughter and the two “had been friends since forever,” she tells me. So when Reegan was born, it wasn’t a surprise that they asked Miss Libby to care for her while both worked — Darice at school and Keith at the correctional facility in town.

 

“Some of the children I’ve watched are grown and have children, and I’ve cared for some of those. These babies feel like mine — they feel like my grands.”

 

Miss Libby says Reegan was a special baby. “They all are, but she was one of the most vibrant girls I had — full of life. I knew something was wrong but never once thought it was diabetes. She didn’t want to eat; all she wanted to do was drink. The last day she was here, I noticed she’d lost a lot of weight in two week’s time. And I can remember her sitting in the high chair. Darice said, ‘Miss Libby please see if you can get her to eat.’”

 

“She always had a little belly on her because she loved eatin’,” says Miss Libby. “But you could see her ribs that day. When I undressed her to bathe her after throwing up, you could see her ribs. And I said, ‘Baby, why are you losing so much weight?’”

Miss Libby is crying as she speaks, her hands clasped. “If I had known that had been that last time holding her, I would have held her tighter.”

 

“That day she went to Chapel Hill. I went to see her that Saturday. They’d just gotten her sedated, and I said, ‘Reegie, It’s Miss Libby. You ready to get back? ’Cause we’re ready for you to come back to daycare.’ I started saying all the children’s names, and she held out that little hand and moved it. I said, ‘We’re waiting on you to come back so we can dance.’”

 

Miss Libby tells me about how they celebrate Reegan’s birthday still. The children eat cake, and the daycare is decorated in balloons. From the back room Miss Libby takes the high chair she used to sit in and places it in the kitchen.

 

“She’d sit right here,” she says.

 

It stares blankly at us, and there are no words for this moment. Outside, a car drives by, a child shouts. Inside, an old country clock marks a heartbeat of time.

 

“I have Type 2 diabetes,” Miss Libby tells me. “And I said, why didn’t I know right away? Why didn’t I know? Was there something I could have done?”

 

She’s weeping, her grief right on the surface.

 

“I know we can’t bring her back. But I’ll do anything to help. Darice has been fighting so hard to save the lives of other babies. I know the signs now. And if a baby doesn’t want to eat and only drink, I ask their moms if I can check their sugar. ‘It’s just going to be a quick stick,’ I tell them.”

Type 1 diabetes is an autoimmune disease and, undiagnosed, an insidious killer. When people hear “diabetes,” they usually think about Type 2 — a different disease, where the body is unable to properly use the insulin it produces. It’s also called “insulin resistance.”

 

Type 1 diabetes is another beast. For reasons unknown, the body attacks its own insulin-producing cells, called beta cells, believing them to be foreign and a threat. This behavior has disastrous consequences. Without the hormone insulin, the body can’t process sugar (glucose). Without glucose, the body starves.

 

Something else happens at the same time — diabetic ketoacidosis (DKA). When the body can’t get glucose to the cells for energy, it starts to break down fat and muscle. A chemical byproduct from this survival mechanism is ketones, which turn the blood acidic.

 

Without insulin, ketone levels continue to rise. As the unused sugar builds, the acidity in the blood increases to the point that it will start spilling into the urine and become noticeable on the breath as a distinct fruity smell. It will begin to wreak havoc on vital organs and systems, even affecting eyesight.

 

If the patient doesn’t get insulin, he or she will lapse into a diabetic coma and die.

 

DUEL SHEPPARD
REEGAN’S GRANDFATHER

The Lumber River is a 133-mile stretch of black water that runs from North to South Carolina and eventually to the Atlantic Ocean. It is the same river, Darice says, she and her husband Keith went fishing on for their first date as teenagers.

 

Reegan is buried right beside it.

 

Duel Sheppard, Reegan’s grandfather, takes a handmade wreath from his car. It’s made of sparkling ribbon: purple, pink, and white. A plastic princess crown is secured to its top.

 

A handful of silk poppies are already in the ground. A broken plastic princess crown, left from a previous visit, lies beside the flowers. Duel places the fresh wreath in front of the grey headstone — it too, is shaped like a princess crown.

 

It reads “Princess Reegan” above her birth name, “Reegan Karice Oxendine.” “May 12, 2012 – September 20, 2013.”

 

“I got two plots here,” he says. “I never anticipated Reegan coming here second. I thought it’d be me.” He gives a short laugh and shakes his head.

 

Reegan is buried beside her grandmother.

 

 

On Reegan’s grave her photo is etched inside a crown where a jewel would be placed. The baby is smiling, wearing a zebra shirt, a bow on her head. I learn later that this is the photo taken at her first birthday party.

 

“She had a little bubbly personality,” Duel says of his granddaughter, “for the time that we knew her. Joyful, happy and carefree — much like her mother.”

 

“Was it a surprise to the family?” I ask.

 

“Yes,” Duel says. “I never did think once it was diabetes. It never did cross my mind to have the doctors check her blood and see if she had it.”

 

Duel describes the sudden weight loss, a prevalent symptom of the onset of Type 1 diabetes. He tells me how he thought she’d gotten thin for a baby her age.

 

“To come on an infant like that,” he says, “and to affect her so badly and acutely. Man, it was unrelenting.”

 

According to her records at Purcell Clinic, her pediatrician’s office, the toddler had lost a rapid amount of weight in the visits leading up to her death. Records show that at as a 2-month-old she was close to the 70th percentile. By her check up at 1 year old, she was at the 50^th percentile. Just 3 months later, she was down below the 10th percentile.

 

“Any significant weight loss should be a red flag to physicians. One must always look at the growth chart at well and urgent care visits,” says pediatrician Raquel Burgos. “In this case this was a sign that something was seriously wrong.”

 

At the start of what became 30 days on life support at UNC Chapel Hill, a hemoglobin A1c test was performed. The test gives an average of blood sugar levels over a three-month period. It showed Reegan’s blood glucose started to be elevated soon after she turned 1 year old.

 

Marina Basina, an endocrinologist at Stanford, reviewed the medical records. “The main question is why was DKA missed for such a long time?” Basina said. “It looks like the symptoms [of Type 1 diabetes] started at least one to two months before presentation with DKA.”

 

“Progressively, her appetite decreased,” says Darice. “And I called the doctor’s office, and they said, ‘She’ll eat when she’s hungry.’ And then it progressed to her drinking a lot, and they said, ‘Well, she’s got a virus.’”

 

“A virus,” Keith says. “She went from being the healthiest of our two babies to the sickest.”

 

Flu-like symptoms can often mask what is actually Type 1 diabetes. Sometimes a viral infection can be the environmental trigger that starts the onset of Type 1. Three months before Reegan died, she was diagnosed by Purcell Clinic with an “unspecified viral infection.”

 

“Just keep her hydrated, they said,” says Darice. “And then she started vomiting, so we took her back in.”

 
 

 

 

Darice and Keith sit together on their sofa in their home. Their 12-year-old son, Keison, sits across the room. As Darice speaks, Keith and Keison nod, affirming the list of misinterpreted symptoms.

 

“And I remember calling up the doctor, and I said, ‘Her breath has a smell to it.’”

 

She says the staff at Purcell Clinic told her they didn’t know what the smell was and that it was most likely just acid reflux.

 

According to pediatrician Raquel Burgos, acid reflux is most often diagnosed in young infants and is much improved by age 6 months. At 16 months old, a new diagnosis of acid reflux is uncommon.

 

“We gave her medicine for the acid reflux,” says Darice. “But she got worse. That’s when we knew something was awfully wrong, like they just missed something.”

 

The notes from Reegan’s third and final visit to Purcell Clinic are brief and ominous: “Vomiting/LABORED BREATHING, FATIGUE. WAS SEEN HERE SATURDAY [4 days prior].”

 

Within the hour, Reegan was sent to the emergency room at Scotland Memorial Hospital in Laurinberg, North Carolina. It is here that her blood work was run. It was also the first time her blood glucose level was checked. The notes from the physician on duty say, “Lab called. Sugar +1000!!!”

 

A normal blood sugar is between 70 to 140 mg/dl.

 

 

 

Reegan was still not diagnosed with Type 1 diabetes, though. She was treated for dehydration and given insulin at Scotland Memorial, but nowhere on the records does it state that she was in DKA from Type 1 diabetes.

 

In fact, the life-flight nurse who moved her from Scotland Memorial to UNC Chapel Hill tells me, “The diagnosis that we got was respiratory distress, and rule out abdominal mass.” Reegan’s discharge diagnosis is “abdominal mass.”

 

Upon examining Reegan’s x-ray from Scotland Memorial, endocrinologist Basina explained that “this was most likely due to DIC (disseminated intravascular coagulation) or severe blood clotting.”

 

“She was severely acidotic on admission,” said Basina, “and had secondary infections from untreated diabetes along with organ failure that was not possible to reverse in such a young child.”

When caught in time, most are able to manage the disease with insulin and constant monitoring of blood glucose levels. However, Reegan’s case of misdiagnosis and diagnosis in DKA is not an anomaly. Multiple studies have shown that around 40% of people diagnosed with Type 1 diabetes are in DKA upon diagnosis. This problem is largely due to missing the warning signs.

 

Darice tells me that after Reegan passed, she talked to Joey Bell, MD, a Lumbee pediatrician in town, and asked him why he thought multiple physicians had missed the diagnosis. “He actually said, ‘Even though I’m a Type 1 diabetic, you just don’t connect children and diabetes. You think it only happens to adults.’”

 

This may be due to the fact that Type 1 diabetes is rarer than Type 2 — of the 30 million Americans with diabetes, only 5-10 percent of that population has Type 1. Moreover, the majority of people living with diabetes (both Type 1 and Type 2) are adults.

 

Reegan was also born into a primarily Native American population with elevated rates of Type 2 diabetes (CDC). Robeson County in particular has a death rate for diabetes double that of the state.

 

In the span of four years 300 people died from diabetes in Robeson County (health report)

 

The county population is just 134,168. While one can assume that the cause of death is mostly Type 2 diabetes, it is uncertain, as the report does not differentiate between Type 1 and Type 2 diabetes.

 

This failure to distinguish between the two diseases is not just a problem in Robeson County. In 2017, the Center for Disease Control published their periodic National Diabetes Statistics Report. Even in this extensive, governmental study, it states: “Most estimates of diabetes in this report do not differentiate between Type 1 and Type 2 diabetes.”

 

“The fact that the CDC doesn’t even segment the diabetes data by type,” says Sarah Lucas, CEO of Beyond Type 1, a Type 1 diabetes nonprofit, “is a perfect example of how we are failing to even have the ability to provide accurate information. It’s no wonder the community is confused.”

 

 

Dr. Joey Bell was misdiagnosed with Type 2 diabetes in his 40s. One weekend, he says he felt an extreme thirst and began urinating a lot. He knew the symptoms. The next day he had his blood sugar tested. It was high.

 

“I have always been in good health,” he says. “Very active, played sports and was never overweight, but I was treated as a Type 2 diabetic for two years until finally I was set up with an endocrinologist from Chapel Hill. He said I bet you’re a Type 1. And I was.”

 

“Do you have a history of Type 1 in your family?” I ask.

 

“No.”

 

“Were you surprised at the diagnosis?”

 

“My jaw dropped,” he says. “Like most Lumbees, the history is strong for Type 2, and me being in my 40s, they assumed I was Type 2. But I couldn’t keep my blood sugar under control. I would be so tired; I could barely go to work. I would wake up at night, cramping. I lost 30 pounds, and I didn’t have 30 pounds to lose. The first day I was on insulin, I was better.”

 

I ask him if he has seen an increase in Type 1 diabetes in his practice.

 

“In the 28 years I have been practicing, I have seen more and certainly younger patients diagnosed as Type 1,” he says. “Just this year, I diagnosed a 4-year-old. She didn’t have the classic symptoms of drinking and peeing excessively and sudden weight loss. The reason I checked the blood sugar on that child was persistent vomiting.”

 

“Most physicians, if you gave that scenario to them in a case study, Type 1 diabetes wouldn’t come up on their radar. Because I have Type 1, I’m more sensitive to it. Blood sugar is at least part of something we should do in a work up.

 

Her blood sugar was so high we couldn’t read it on the glucometer in our office.”

 

“Do you think routine testing would be helpful?”

 

“That’s a good question. I talked to Ms. Oxendine about that and with other physicians. I think it could be helpful. It is still rare, so you have to weigh out cost-benefit. I think there could be a place for routine testing, though.”

 

SENATOR JANE SMITH

 

Not only is DKA life threatening, the costs for care are astronomical. Senator Jane Smith who helped pass Reegan’s Rule tells me prevention is a lot cheaper than treating the end result. According to a 2015 study by T1D Exchange, “more than 12,700 pediatric patients in the U.S. are diagnosed with DKA each year. Researchers estimate the annual total cost of treating these pediatric DKA cases is approximately $90 million. Eliminating just 10 percent of these cases (approximately 1,200 patients) could result in a potential savings of $9 million per year.”

 

At UNC Chapel Hill where Reegan spent her last 30 days, I meet a clinical pharmacy specialist who specializes in emergency medicine.

 

“How often do you see patients in severe DKA come in?”

 

“I see a DKA patient at least once a day, sometimes twice a day at a facility this big. We’re a 900-bed hospital, so we get a lot of referrals from other hospitals.”

 

“Do they have Type 1 or Type 2 diabetes?”

 

“A mix.”

 

We discuss the feasibility of mandatory testing for early detection of Type 1 diabetes.

 

“I think if there were reluctance, it would just be because it’s one more test you’re doing in an otherwise healthy child that involves needles and is going to be upsetting or somewhat traumatizing. That being said, most pediatricians I work with and am acquainted with, they do it anyway.”

 

“What’s the cost of a blood glucose test?”

 

“A blood glucose test isn’t particularly expensive. Here in the hospital if we have a suspicion of anything at all, we do them routinely, all day long. It’s a fairly low cost test.”

 

“What is the cost of treating DKA in the hospital?”

 

“Easily over $10,000 just for a one-day admission.

 

Most DKA admissions are not in the hospital more than 48 hours, but even for 48 hours, I think it could easily surpass $20,000, if not more.”

I learn from the Oxendines that they are still paying a monthly bill for medical services from the days leading up to Reegan’s death.

 

“It is clearly a mother’s love for her child which goes far beyond,” says Tom Karlya, a parent of a child with Type 1 diabetes and an advocate in the diabetes space who helped pass Reegan’s Rule. “Darice was not stopping. If we all had that tenacity, certainly more would get done.”

 

In May 2015, after much struggle, the statute of Reegan’s Rule was passed by North Carolina legislators. It encourages pediatricians to teach the symptoms of Type 1 diabetes to parents of children ages 1-6.

 

Each year, 18,000 youth are diagnosed in the U.S. [NIH]

 

While the legislation is the first of its kind in the diabetes space, its final version is not what its creators had envisioned.

 

The first draft of the bill asked that pediatricians be required to test children between the ages of 1-6 for Type 1 diabetes at their annual exams with a simple blood glucose test.

 

House Representative Charles Graham drafted the bill after Darice Oxendine came to him with her tragic story. I meet with Graham at a Burger King in Robeson County.

 

 

“I wanted to do something to prevent that traumatic situation [in reference to Reegan] from occurring again with another family,” says Rep. Graham. “I got a lot of information from parents across the state and country who had had similar situations with their babies. I call them babies because that’s what they are.”

 

“When you say, ‘similar situations,’ what do you mean?” I ask.

 

“Misdiagnosed,” he says, “and in DKA before being properly diagnosed with Type 1. When I heard Darice’s case and then got all those emails from families saying their children, too, had been misdiagnosed, I saw the need to do something. That bill was filed as a clean bill. I wanted to have diabetes testing for young children.”

 

“What is a ‘clean bill’?” I ask.

 

“Meaning there’s nothing attached to the bill. No other legislation that somebody else wanted to attach to it. Darice and I wanted to have children tested for Type 1 diabetes at their welfare visits. The legislature didn’t like that.”

 

“Why not?”

 

“They thought it was an intrusion of privacy, having legislature mandate what doctors do. They didn’t take too kindly to that.”

 

Despite Darice having collected 2,600 signatures, Graham tells me the legislature was unanimously against it — the pediatricians, the medical lobbyists and the medical professionals in general.

 

“So we had to lighten it up a bit,” he says, “and I was willing to do that to get something legislative that would bring attention to the problem. I amended the bill to say that it would ‘encourage,’ not ‘require’ or ‘mandate.’ It would encourage the child’s doctor to have discussions with and educate the parent on the symptoms of Type 1 diabetes.”

 

“And how would they encourage?”

 

“A private conversation,” he says. “And that’s the problem we had with it; it is going to be at the doctor’s discretion.”

 

“When a child dies like this, who is culpable? Who is to blame in society?”

 

“I think the medical society is to blame,” says Rep. Graham. “These folks are experts. Especially pediatric society, pediatric associations. They’re to blame. They have these babies’ welfare in their hands. I can’t pass the buck on anywhere else. It’s not the legislature; it’s not the parent. They’re doing their due diligence; they’re following through on their treatment schedule. And if the doctors, in this case, did not do that one test, if they don’t do that procedure, then these children are highly at risk. Same thing could happen to another family’s child that happened to Reegan.”

 

 

 

Pastor Stevie Jacobs is sitting in the pew, one row behind me, my back to the cross at the pulpit. Even though we sit at the entrance, his voice fills the church. He has a barrel chest and hands as big as dinner plates. Darice calls him “Papa.”

 

“And clearly, I said to God, I just prayed, ‘God, what in the world, what am I gonna say to these … How am I gonna help them?’”

 

He was in the room when Reegan was taken off life support. He describes to me how Reegan was laid in her mother’s arms, tears staining his dark blue polo.

 

It is early evening, and the church is empty, save the voices coming from the daycare center in the back. On a large brick wall is a stained glass window. The scene of the last supper — Jesus in the forefront, his disciples gathered around him, before the table, the offering.

 

“Just like you have faith in God, you have faith in the medical system,” says Pastor Jacobs.

 

He raises up his big shoulders as he speaks, animating his words with every gesture.

 

“Sometimes we get used to systems,” he says. “And we think because a system has brought us this far. It’s alright. But systems always change. Systems like our society, our economy, like our education, our knowledge, they’ve got to be geared to change. The fault lies when we depend on old systems and cannot change.”

 

The evening light is warm and forgiving. It bathes our faces as we stand in the Oxendine’s front yard talking.

 

Darice’s eyes are bright in the light, for the first time I see, green. She lifts a necklace from her chest to show me: a long silver chain with charms. “It’s from my sister, Terena, and sisters in Christ Tennille and Sharkell.”

 

 

 

I hadn’t noticed it until now.

 

“Pink and purple beads with the crown represent her being a princess,” she says. “Her initials R and K are for Reegan Karice. An owl because of her big bright brown eyes. A little sister charm with her birthstone and a rainbow because she was called over it.”

 

In a small clear case is also a lock of black hair.

 

“When we are feeling sad,” says Darice, “we minister and we sing. It’s a stress relief. Our church has backed us and supported us in every way.”

 

“The whole community,” says Keith. “The whole community.”

 

“That goes back to our tribe,” says Darice. “We’re a close-knit people, and loving. Our people are connected. We had so many praying for us and are still praying for us. Even though the boys [Keith and Keison] may be angry at times and I may be sad, we depend on each other. We lean on each other and love each other — that’s how we’ve made it through, because of the Lord and because of people praying.”

 

When Reegan was life-flighted to Chapel Hill, her family made the two-hour drive to the hospital, unsure of what lay before them. What a long journey that must have been. And then the month that followed, the many sleepless nights, the testing, the waiting, the hope, fragile like a winged thing in a rainstorm.

 

We know from the medical records that when they take Reegan off ECMO, the machine that is both breathing for her and beating her heart, there is a flurry of people around her. The report is short; they do not examine her as they had routinely done the previous 30 days. She is gone.

 

Just a week prior, Darice said she’d dreamt that Reegan sat up in her hospital bed and looked around. Keison, her brother, had called to say that she could get into all of his things, even his fishing rod, if she’d just come home.

 

She’d been dressed in her princess socks and a bow at the crown of her head.

 

Outside of oncology, there is a piano. I imagine Keith playing it, as they’d described to me, Darice and Keison singing with him. In the courtyard is a statue that looks like a slice of moon.

 

“Previously healthy” her medical records had read, at the start of every day, for the 30 days she was at Chapel Hill. “Previously healthy.”