Black lives in NC are be­ing cut short be­fore they be­gin

The News & Observer (Sunday) - - Front Page - BY LYNN BONNER lbon­[email protected]­sob­server.com

At Christ­mas, Re­nee Schoolfiel­d hangs or­na­ments dec­o­rated with her chil­dren’s names. On Hal­loween, she won­ders what cos­tumes she would have put on her son and daugh­ter — if they had lived.

Re­minders of the two chil­dren Schoolfiel­d lost nine months apart are through­out her house and stored as pho­tos and videos on her cell­phone. Both chil­dren were born pre­ma­turely and lived less than a day.

Her daugh­ter, Rayna, who lived three hours, and her son Dal­las, who lived just an hour, were two of the more than 300 black ba­bies who died in North Carolina in 2018. To­gether, they are part of a sad fact about the risk of be­ing born black in North Carolina and the United States: Black ba­bies are more than twice as likely to die be­fore their first birth­days than white ba­bies.

Schoolfiel­d was 20 weeks preg­nant when she went into early la­bor and gave birth in Fe­bru­ary 2018 to Rayna.

“We just held her un­til she passed away,” said Schoolfiel­d.

Schoolfiel­d, 33, grew up in Hert­ford County. Ex­cept for at­tend­ing El­iz­a­beth City State Univer­sity and a few years liv­ing in At­lanta, she has lived in this ru­ral county close to the Vir­ginia bor­der, about 120 miles north­east of Raleigh.

Her cell­phone video of a gen­der-re­veal party in a park shows a gath­er­ing of fam­ily and friends cel­e­brat­ing the an­tic­i­pated ar­rival of a baby girl.

Schoolfiel­d said she had one in­stance of bleed

ing that sent her to the emer­gency room very early in her preg­nancy, and re­sponded to her doc­tor’s worry about her weight by drop­ping 30 pounds.

Schoolfiel­d weath­ered a de­pres­sion over her daugh­ter’s death. By sum­mer that year she was preg­nant with a boy.

The sec­ond gen­der-re­veal party was just Schoolfiel­d and her fi­ance, Domonique Moore, in a Chi­nese restau­rant open­ing an en­ve­lope. They had plans for an­other big party, but couldn’t wait to find out whether they were hav­ing a son or daugh­ter. She called it their “se­cret gen­der re­veal.”

With the sec­ond preg­nancy, Schoolfiel­d, a com­mu­nity health worker, started tak­ing pro­ges­terone in­jec­tions at 16 weeks to ward off early la­bor. It hap­pened again any­way. Dal­las was born at 22 weeks.

“I did ev­ery­thing I was sup­posed to do. Got my in­jec­tions. Took my pre­na­tal vi­ta­mins,” Schoolfiel­d said. “We were think­ing that ev­ery­thing was go­ing to be bet­ter, but it turned out the same.”

Pre­ma­tu­rity and birth de­fects are the top two rea­sons ba­bies die be­fore they turn a year old.

North Carolina con­tin­ues to have one of the worst records in the na­tion for the deaths of ba­bies a year or younger. The rate of black ba­bies’ deaths is a big rea­son.

Statewide, the gap be­tween black and white in­fant deaths was wider in 2018 than it was in 1999. The state has had to ac­knowl­edge that it won’t meet its goals for re­duc­ing that gap by this year.

“It’s an atroc­ity and we need to ad­dress it,” Dr. Mandy Cohen, head of the state De­part­ment of Health and Hu­man Ser­vices, said of the racial gap at an Oc­to­ber ma­ter­nal and in­fant health sum­mit con­vened by the NC Med­i­cal So­ci­ety and its foun­da­tion.

Griev­ing the deaths of her chil­dren, Schoolfiel­d found a well of sup­port among fam­ily, friends and co­work­ers. And in writ­ing about her ex­pe­ri­ences on so­cial me­dia, she found that other women from the Ahoskie area had sto­ries of the deaths of their own ba­bies.

“A lot of our Face­book friends were messaging us that they went through the same thing,” she said. “A lot of peo­ple in this area lost chil­dren.”

Hert­ford County, where Ahoskie is the big­gest town, makes up a small cres­cent of three coun­ties in north­east­ern North Carolina that in­cludes Ber­tie and Washington coun­ties that from 20142018 had the high­est in­fant mor­tal­ity rates in the state.

Schoolfiel­d and Moore said they know why in­fant deaths are more com­mon in their area.

“In ru­ral ar­eas, there’s not re­ally wide ac­cess to health care,” she said.

”Some peo­ple can’t af­ford to go far­ther. They don’t have the trans­porta­tion to go to all these ap­point­ments.”

Eco­nomic op­por­tu­nity in the re­gion is lag­ging, Moore said, and good­pay­ing jobs are scarce.

“Lack of re­sources, knowl­edge, pay, ev­ery­thing,” he said.

NO CON­SIS­TENT PROGRESS

North Carolina has tried for years to try to nar­row the gap be­tween black and white in­fant deaths and keep more black ba­bies alive.

In 2011, the state pub­lished a plan called Healthy North Carolina 2020 that had as one of its goals nar­row­ing the racial gap to lower than 2 — specif­i­cally to 1.92 — by 2020. It was soon clear that the state wasn’t go­ing to reach that goal. In some years, the racial gap in in­fant deaths grew. In 2010, the ra­tio was 2.4. In 2016, it was 2.68.

Last year, North Carolina es­sen­tially re­set the clock, com­mit­ting to reach the 1.92 dis­par­ity ra­tio by 2025 as part of its Early Child­hood Ac­tion Plan.

In 2018, the death rate for all ba­bies dropped to its low­est level in decades, and the dif­fer­ence be­tween black and white death rates nar­rowed slightly. But black ba­bies were 2.44 times more likely to die in 2018 than white in­fants, a wider gap than 2.33 times in 1999. In­for­ma­tion for 2019 is not yet avail­able.

The racial dif­fer­ence in baby deaths is a na­tional prob­lem that states, local gov­ern­ments, neigh­bor­hoods, and non­prof­its say they are try­ing to solve.

“It’s been our great­est chal­lenge,” said Belinda Pet­ti­ford, head of the women’s health branch at the state De­part­ment of Health and Hu­man Ser­vices. “Even with North Carolina’s in­fant mor­tal­ity rate at its low­est in the state’s his­tory, we still strug­gle with that dis­par­ity ra­tio. We have re­al­ized that un­til we ad­dress the dis­par­ity ra­tio our over­all in­fant mor­tal­ity rate won’t get a lot bet­ter.”

State ef­forts to re­duce the racial gap in baby deaths fo­cus largely on low-in­come women. Poverty has a role in how often women see doc­tors, the food they can af­ford, and where they live.

Still, some black in­fants who don’t sur­vive are born into fam­i­lies who have good in­surance and doc­tors nearby.

THE ROLE OF RACISM

Black ba­bies die at higher rates than white ba­bies no mat­ter their moth­ers’ ed­u­ca­tion level or age. In fact, black ba­bies whose moth­ers have grad­u­ate or pro­fes­sional de­grees die at higher rates than white chil­dren born to moth­ers who didn’t fin­ish high school, said Keisha Bent­ley-Ed­wards, an as­sis­tant pro­fes­sor at Duke Univer­sity’s School of Medicine who stud­ies health eq­uity.

Death rates drop for in­fants born to white women 20 and older, and don’t in­crease un­til the women are in their 40s. In­fant mor­tal­ity rates are higher for ba­bies born to black moth­ers of all ages, and they don’t change much as women get older.

“The risk fac­tors for black women are riskier,” Bent­ley-Ed­wards said, “and the pro­tec­tive fac­tors are not as pro­tec­tive.”

A re­searcher based at the Univer­sity of Michi­gan, Ar­line Geron­imus, the­o­rizes that chronic stress from racism and his­toric dis­crim­i­na­tion causes health prob­lems, in­clud­ing preterm births, in black Amer­i­cans. She calls this the­ory “weath­er­ing.”

Re­search on how the body re­sponds to con­stant stress is get­ting a lot of at­ten­tion, Bent­ley-Ed­wards said, and doc­tors should ask ex­pec­tant moth­ers about toxic stress, in­clud­ing stress at work.

Ef­forts to im­prove in­fant mor­tal­ity rates fo­cused on low-in­come women and chil­dren, but did not specif­i­cally con­sider the ef­fects of struc­tural racism, Bent­ley-Ed­wards said. As a re­sult, in­fant mor­tal­ity rates dropped, but the racial gap is largely un­changed.

“We know that what we’ve been do­ing hasn’t worked, so it’s time to be more in­no­va­tive,” she said.

State money, fed­eral and foun­da­tion grants, peer ed­u­ca­tion pro­grams at uni­ver­si­ties, church­based ef­forts and pro­grams based at local health de­part­ments are all aimed at try­ing to save more black ba­bies’ lives. In 2011, Com­mu­nity Care of North Carolina, the Med­i­caid man­age­ment or­ga­ni­za­tion in North Carolina, started a pro­gram called Preg­nancy Med­i­cal Home that helps at-risk preg­nant women get to doc­tors’ ap­point­ments, to phar­ma­cies, or food.

Nar­row­ing the racial gap is one of the pri­or­i­ties for the state De­part­ment of Health and Hu­man Ser­vices, which has a bun­dle of strate­gies aimed at im­prov­ing ex­pec­tant moth­ers’ well-be­ing and the health of young chil­dren. Part of that ef­fort aims to re­duce the in­flu­ence of im­plicit bias, un­con­scious be­liefs and stereotype­s that af­fect be­hav­ior.

Ex­pec­tant moth­ers need to be com­fort­able with providers and treated eq­ui­tably, Pet­ti­ford said. Good hous­ing, food, safe homes and com­mu­ni­ties are also key.

“We spend a lot of time fo­cus­ing on women them­selves,” she said. “I think we also have to look at some of the sys­tems women are en­gaged in.”

Pet­ti­ford said she’s seen providers la­bel women “non-com­pli­ant” when they fail to show up for ap­point­ments with­out med­i­cal of­fices con­sid­er­ing the ob­sta­cles pa­tients may face get­ting to the doc­tor.

“What were the bar­ri­ers that kept her from get­ting to her ap­point­ment on time?” she said. “Is she work­ing some­where where she doesn’t have paid parental leave” or doesn’t have paid va­ca­tion or sick time?

EASTERN NORTH CAROLINA LAGS

The eastern part of the state — coun­ties from Northamp­ton in the north to Onslow in the south and Hal­i­fax, Nash, Wil­son, Wayne and Du­plin on the western bor­der — has wres­tled for years with higher in­fant death rates than the state av­er­age.

Dr. James deVente, med­i­cal di­rec­tor of ob­stet­rics at Vi­dant Med­i­cal

Cen­ter and an as­so­ciate pro­fes­sor at East Carolina Univer­sity’s Brody School of Medicine, noted an ac­com­plish­ment when, in 2017, the re­gion matched the state av­er­age of 7.1 in­fant deaths for ev­ery 1,000 births. By 2018, though, the rate was higher again.

DeVente and An­gela Still, a reg­is­tered nurse and ad­min­is­tra­tor for women’s ser­vices at Vi­dant Med­i­cal Cen­ter, have been work­ing for years to re­duce baby deaths in Eastern North Carolina.

Since 2012, they’ve led a pro­gram to help smaller hospi­tals in the re­gion bet­ter prepare for ex­pec­tant moth­ers and new ba­bies with se­ri­ous med­i­cal con­di­tions. Vi­dant Health cov­ers the cost of the outreach pro­gram.

The outreach pro­gram also helps fig­ure out what equip­ment those hospi­tals need and of­fers in­struc­tion on top­ics such as fe­tal mon­i­tor­ing.

The pro­gram led to ar­range­ments that al­low small hospi­tals to have ready ac­cess to sur­fac­tants, drugs that help pre­ma­ture ba­bies with un­der­de­vel­oped lungs breathe.

DeVente said small hospi­tals did not keep the drug on hand be­cause it is ex­pen­sive and has a short shelf-life. In a small hospi­tal that sees rel­a­tively few pa­tients, a hospi­tal might have to throw out the ex­pen­sive drugs. Now, the small hospi­tals and Vi­dant Med­i­cal Cen­ter in Greenville have an ar­range­ment that al­lows the small hospi­tals to keep the drug in stock with­out wor­ry­ing about waste.

The hospi­tal also of­fers women the op­tion of hav­ing con­tra­cep­tive de­vices in­serted be­fore they leave the hospi­tal af­ter giv­ing birth to re­duce un­in­tended preg­nan­cies and ex­tend the time be­tween preg­nan­cies. Med­i­caid cov­ers the cost of the de­vices, Vi­dant Health spokesman Jason Lowry said in an email. Hav­ing ba­bies too close to­gether is as­so­ci­ated with pre­ma­ture births and low-birth weights.

“It’s a con­trib­u­tor to in­fant mor­tal­ity,” Still said. Long-act­ing, re­versible con­tra­cep­tion “will in­crease the amount of time when she has an­other baby.” The de­ci­sion to use the de­vice is up to the women, Still said, and it can be re­moved.

The gap be­tween white and black in­fant death rates has not nar­rowed in the re­gion, and deVente and Still aren’t sure why.

“I think that’s like the holy grail of ob­stet­rics right now,” deVente said. “I’m not sure any­one knows the key to it.”

In 2018, state data shows that no white in­fants from Pitt County died be­fore age 1, while 11 black in­fants from Pitt County died be­fore their first birth­days.

URBAN COUN­TIES ARE WORSE THAN THE STATE AV­ER­AGE

The mor­tal­ity gap is not ex­clu­sive to ru­ral and low-wealth coun­ties. Black ba­bies die at higher rates in the state’s wealth­i­est, metropoli­tan coun­ties. From 2014 through 2018, black ba­bies from Wake County were nearly 3.8 times more likely to die than white ba­bies from the county. Durham had a gap of 3.5 over the same years.

Durham res­i­dent Laura Miles is much more se­lec­tive about the doc­tors she sees af­ter her first child, Kingston, died in 2009 shortly af­ter his birth. The ex­pe­ri­ence con­vinced her that first-time moth­ers need sup­port and ad­vice while preg­nant and in­ter­act­ing with doc­tors.

Miles, who grew up in the Bronx and moved to Durham to at­tend N.C. Cen­tral Univer­sity, has a con­di­tion that she thought would pre­vent her from get­ting preg­nant.

“I didn’t even think it was pos­si­ble,” she said.

Sev­eral months preg­nant with Kingston, she felt pains and went to her doc­tor.

“I kept telling them, I have cramps here, I have pain here,” Miles said. “The re­sponse was, ‘Well, preg­nancy hurts.’ And they re­ally didn’t ad­dress the fact that I was in pain.”

Miles wor­ried that she wasn’t be­ing taken se­ri­ously. Her hus­band con­vinced her to switch doc­tors.

Miles went into early la­bor, and Kingston was born at 23 weeks with un­der­de­vel­oped lungs. He died in a day.

“Kingston was an ac­ci­dent,” she said, “but he was a miracle be­cause I was told I had a 30% chance of ever hav­ing chil­dren. I put it into my head that I am ac­tively go­ing to try to get preg­nant.”

It took more than two years for Miles to get preg­nant again. And she started feel­ing the same pains she felt with Kingston. Her doc­tor im­me­di­ately or­dered an ul­tra­sound, she said. She had a sur­gi­cal pro­ce­dure to pre­vent preterm la­bor. Dasan — the son Miles calls a “foodie” who grew to love curry goat, rice and peas, and ox­tails — was born about 9 1⁄2 weeks later.

He and his two younger broth­ers ran around the house one Satur­day af­ter­noon as Miles worked to get them or­ga­nized for a trip to the gro­cery store.

“If my first provider was as proac­tive, maybe those steps could have been taken,” she said. “Maybe Kingston could have been here. If they had dug a lit­tle deeper and just ad­dressed the con­cern I had in­stead of just writ­ing it off.”

BLACK BA­BIES DIE AT HIGHER RATES THAN WHITE BA­BIES NO MAT­TER THEIR MOTH­ERS’ ED­U­CA­TION LEVEL OR AGE.

POS­SI­BLE SO­LU­TIONS

Demo­cratic Gov. Roy Cooper’s ad­min­is­tra­tion pushed to ex­pand Med­i­caid govern­ment health in­surance to more unin­sured adults in the last year. Re­search has shown that states that ex­panded Med­i­caid saw big­ger drops in black in­fant death rates.

Med­i­caid pays for more than half the births in the state.

The state House held hear­ings on a pro­posal to ex­tend in­surance to adults who meet in­come guide­lines, work, and pay pre­mi­ums. Repub­li­cans in the state Se­nate have re­fused to con­sider ex­pand­ing Med­i­caid, say­ing it would cost too much.

A study from 2018 found that black in­fant mor­tal­ity rates im­proved more in states that ex­panded Med­i­caid com­pared to states that didn’t ex­pand the health in­surance pro­gram to more low-in­come adults.

Dr. El­iz­a­beth Til­son, state health di­rec­tor and chief med­i­cal of­fi­cer at DHHS, said Med­i­caid ex­pan­sion would be an im­por­tant step.

Com­mu­ni­ties must also look at how fam­i­lies are sup­ported dur­ing and af­ter preg­nancy, Til­son said, and both women and men need to be en­gaged in plan­ning for preg­nan­cies and chil­dren.

“It’s not just one thing,” Til­son said. “It has to be a com­bi­na­tion of things across the life course.”

THE NON-MED­I­CAL PARTS OF HEALTH

DHHS plans to use some of the money from a $10 mil­lion, five-year fed­eral grant to train ob­ste­tri­cians and fam­ily prac­ti­tion­ers to rec­og­nize im­plicit bias us­ing a March of Dimes pro­gram.

The tar­get au­di­ence would be “any health care worker that in­ter­acts with women of re­pro­duc­tive age,” in­clud­ing med­i­cal stu­dents, said Michaela Penix, state di­rec­tor of ma­ter­nal child health and govern­ment af­fairs for March of Dimes NC.

The train­ing is part of a much larger plan to im­prove ma­ter­nal health that in­cludes start­ing a new task force, in­creas­ing ac­cess to med­i­cal spe­cial­ists for pa­tients liv­ing in ru­ral ar­eas through telemedici­ne, and pay­ing for doula ser­vices in a hand­ful of ar­eas. Doulas sup­port women in la­bor. Some also help fam­i­lies with birth prepa­ra­tions and pro­vide sup­port once ba­bies are at home.

Last year the state launched a net­work called NCCARE360, an elec­tronic plat­form that con­nects med­i­cal providers and so­cial ser­vice agen­cies for the pur­pose of re­fer­ring pa­tients to re­sources such as hous­ing, food, coun­sel­ing, or trans­porta­tion. Pri­vate money and fed­eral grants pay for the plat­form, ac­cord­ing to DHHS, and NCCARE360 does not use state money.

The im­por­tance of safe hous­ing came into stark pub­lic view af­ter the deaths of two ba­bies in McDougald Ter­race, Durham’s largest pub­lic hous­ing com­mu­nity. About 280 fam­i­lies were evac­u­ated. Of­fi­cials dis­cov­ered that car­bon monox­ide was leaking from stoves, heaters and wa­ter heaters, The News & Ob­server has re­ported. The state med­i­cal ex­am­iner de­ter­mined that the in­fants did not die of car­bon monox­ide poi­son­ing, but about a dozen peo­ple had been treated for ex­po­sure to the gas, in­clud­ing a 16-day-old in­fant.

In pub­lic fo­rums, res­i­dents de­scribed liv­ing in apart­ments where fe­ces back up into the bath­tub, mold grows out of con­trol and wa­ter drips from their kitchen ceil­ings.

Fifty coun­ties use the NCCARE360 plat­form and DHHS said it will be in use statewide by the end of this year.

Ad­di­tion­ally, as part of the tran­si­tion to Med­i­caid man­aged care in North Carolina, the state is go­ing to test to what de­gree help­ing pa­tients with hous­ing, food, trans­porta­tion and per­sonal safety im­proves their over­all health. Up to $650 mil­lion in Med­i­caid money will be avail­able over five years to pro­vide pa­tients with non-med­i­cal ser­vices. The test will be run in two to four lo­ca­tions.

The ef­fort is in­tended to ad­dress con­di­tions that have a ma­jor im­pact on health, but which doc­tors can­not pre­scribe a pill or pro­ce­dure to cor­rect.

These mea­sures won’t be lim­ited to preg­nant women only, but they could pro­vide in­for­ma­tion on what com­bi­na­tion of ser­vices im­proves the health of ex­pec­tant moth­ers and in­fants.

“If Med­i­caid pays for 53% of the births in North Carolina, which it does, boy, we should be buy­ing health with our Med­i­caid dol­lars” and think­ing of all the things that in­flu­ence ba­bies’ health, Til­son said.

The test will in­clude “ro­bust” eval­u­a­tions, she said, so health-care providers and state ad­min­is­tra­tors can know what com­bi­na­tions of out­side sup­port have the great­est im­pacts.

“This is go­ing to help us an­swer the ques­tion, ‘what works,’ and help us think about how we start re­align­ing pay­ment to what ac­tu­ally works,” Til­son said.

RE­MEM­BERED BY FAM­ILY

In the mean­time, mem­o­ries of some of the hun­dreds of ba­bies who die each year are kept fresh by their fam­i­lies.

Schoolfiel­d and Moore cel­e­brated their chil­dren’s birth­days. Dal­las and Rayna’s graves are near their par­ents, on Schoolfiel­d’s mother’s prop­erty. They make sure fam­ily pho­tos have the chil­dren’s me­mo­ri­als in the back­ground.

Schoolfiel­d and Moore plan to hold their wed­ding cer­e­mony at her mother’s house, so the me­mo­ri­als are in the wed­ding pho­tos.

“We want to in­clude them in ev­ery­thing we do,” Schoolfiel­d said.

Af­ter Miles’ son Kingston died, she got a tat­too on her chest that in­cludes his birth­date, hand and foot prints.

“That was one of the big­gest heal­ing parts for me,” she said.

When her other sons say they want her to get tat­toos with their prints, Miles said she tells them “you can lit­er­ally put your hand and foot on me.”

JULI LEONARD [email protected]­sob­server.com

Laura Miles holds her old­est liv­ing son, Dasan, 7, in the fam­ily’s Durham back­yard on Oct. 5. Miles’ first child, Kingston, was born at 23 weeks with un­der­de­vel­oped lungs and died in a day.

Cour­tesy of Re­nee Schoolfiel­d

“Rayna and Dal­las are buried at my mom’s house on our fam­ily land; I got these flags made as burial mark­ers. My mom does an awe­some job with keep­ing the yard look­ing beau­ti­ful for them,” said Re­nee Schoolfiel­d, who lost both of her chil­dren shortly af­ter they were born.

JULI LEONARD [email protected]­sob­server.com

Durham res­i­dent Laura Miles had the hand and foot­prints of her first child, Kingston, tat­tooed on her chest shortly af­ter he died in 2009. Kingston, who only lived briefly af­ter birth, would be turn­ing 11 this sum­mer.

Keisha Bent­leyEd­wards

Belinda Pet­ti­ford

Cour­tesy of Re­nee Schoolfiel­d

Re­nee Schoolfiel­d re­acts to find­ing out the gen­der of her first baby, Rayna, in Jan­uary 2018.

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