Prem ba­bies at risk of racial bias

In­ves­ti­ga­tion re­veals eth­nic di­vide in re­sus­ci­ta­tion

Weekend Herald - - Front Page - Ni­cholas Jones

Ba­bies close to death are less likely to get life-sav­ing treat­ment if they’re Ma¯ori, Pa­cific or In­dian — and ex­perts partly blame racial bias. A Week­end Her­ald in­ves­ti­ga­tion can re­veal the eth­nic di­vide in re­sus­ci­ta­tion at­tempts on very pre­ma­ture in­fants.

A top-level health body is now call­ing for all ma­ter­nity and neona­tal work­ers in New Zealand to be put through com­pul­sory anti-racism train­ing.

The num­ber of in­fants born near the “edge of vi­a­bil­ity” — 23 to 26 weeks — is small at about 170 a year. How­ever, 10 years of records re­veal a dis­turb­ing eth­nic di­vide.

Re­sus­ci­ta­tion was tried on 92 per cent of Ma¯ori ba­bies, 89 per cent of Pa­cific and 86 per cent of In­dian.

That com­pared with 95 per cent for “other” — mostly Pa¯keha¯ and nonIn­dian Asians — which med­i­cal ex­perts say is a sta­tis­ti­cally sig­nif­i­cant dif­fer­ence.

“In­sti­tu­tional bias or im­plicit bi­ases are likely to play at least some part,” con­cluded the Peri­na­tal and Ma­ter­nal Mor­tal­ity Re­view Com­mit­tee, a tax­payer-funded panel tasked with re­view­ing deaths of ba­bies and mothers.

The Week­end Her­ald in­ves­ti­ga­tion has also found: Ma­jor dif­fer­ences in sur­vival rates across neona­tal in­ten­sive care units. Some don’t usu­ally re­sus­ci­tate at 23 weeks while oth­ers will try in al­most ev­ery case.

At least one fam­ily moved cities be­cause of such re­gional dif­fer­ences. Their daugh­ter was born at 23 weeks and sur­vived. A ground-break­ing study has ob­served eth­nic bias among fi­nal-year med­i­cal stu­dents at uni­ver­si­ties of Auck­land and Otago. Auck­land DHB has brought in pol­icy to fast-track all el­i­gi­ble Ma¯ori and Pa­cific job ap­pli­cants straight to in­ter­view.

Ex­tremely pre­ma­ture in­fants can­not sur­vive with­out re­sus­ci­ta­tion. Doc­tors al­ways re­sus­ci­tate from 25 weeks, but never be­fore 23 weeks ges­ta­tion.

The in-be­tween “grey zone” presents an ag­o­nis­ing de­ci­sion for par­ents, made af­ter coun­sel from the neona­tal pae­di­a­tri­cian and ob­ste­tri­cian.

Chances of sur­vival can be slim. Ba­bies that live can have se­vere dis­abil­i­ties in­clud­ing cere­bral palsy and blind­ness.

Keri Thomp­son, whose son was born at Waikato Hos­pi­tal at just 24 weeks and is now at law school, said she and her whanau felt “like aliens” at times.

One doc­tor bluntly told her that her baby had less chance of mak­ing it be­cause he was Ma¯ori, she said. Thomp­son later in­ter­viewed oth­ers about their ex­pe­ri­ence for a the­sis, and said rel­a­tively small ac­tions could de­mor­alise or lift up pa­tients. For ex­am­ple, strict vis­i­tor poli­cies which did not recog­nise that whanau went be­yond the nu­clear fam­ily.

“You are away from your own fam­ily. You may not have a lot of money and have to come from out of town. And you add the cul­tural dif­fer­ences — miss­ing out on karakia, all that sort of stuff that would nat­u­rally hap­pen.”

The mor­tal­ity re­view com­mit­tee an­a­lysed 10 years of data for ba­bies born from 23-26 weeks.

The com­mit­tee’s re­ports go to the Health Min­is­ter and DHBs. It wants work­force train­ing to “re­duce and min­imise the im­pact of im­plicit bias and racism”.

Dr John Tait, chair­man of the mor­tal­ity re­view com­mit­tee and chief med­i­cal of­fi­cer at Cap­i­tal & Coast DHB, said no baby would not be re­sus­ci­tated be­cause of the colour of its skin. Rather, bias could be found ear­lier in the chain of events lead­ing up to the birth, and help ex­plain why more Ma¯ori, Pa­cific and In­dian women have ba­bies whose con­di­tion, such as low birth weight, makes re­sus­ci­ta­tion less vi­able.

“Is enough ef­fort go­ing into Ma¯ori and Pasi­fika health to pre­vent them go­ing into labour early? If peo­ple don’t come to an­te­na­tal clin­ics . . . should we be go­ing to them?”

Asked if doc­tors’ bi­ases could af­fect dis­cus­sions with par­ents about whether to try to keep a baby alive, Tait said that was pos­si­ble — and a rea­son why his com­mit­tee wants cul­tural com­pe­tency train­ing.

“We are still look­ing through the lens of Pa¯keha¯. Whereas the lens of Ma¯ori may be quite dif­fer­ent.”

Fig­ures ob­tained un­der the Of­fi­cial In­for­ma­tion Act show Ma¯ori, Pa­cific and In­dian fam­i­lies take the bur­den of ex­tremely pre­ma­ture birth.

They ac­counted for 85 per cent of births at 23 weeks in Coun­ties Manukau, for ex­am­ple, with fewer than one in five sur­viv­ing.

At Welling­ton Hos­pi­tal NICU, which has a more ac­tive ap­proach to re­sus­ci­ta­tion, over 40 per cent of Ma¯ori, Pa­cific and In­dian ba­bies born at 23 weeks sur­vived.

A work­ing group is now con­sid­er­ing align­ing prac­tice across the coun­try, in­clud­ing re­sus­ci­ta­tion from 23 weeks.

For 21 days Alysha McVeigh lay still, aware that move­ment would bring on labour and death for her un­born child. She’d been rushed to Welling­ton Hos­pi­tal af­ter her am­ni­otic sac bulged into her birth canal.

Aly was just 20 weeks preg­nant. Hos­pi­tal pol­icy was to at­tempt re­sus­ci­ta­tion only on ba­bies born af­ter 23 weeks.

Even on to­tal bedrest, the odds were against her un­born child last­ing a few days, let alone 21.

She and hus­band Adrian named their daugh­ter Tia-Jane. In a ster­ile hos­pi­tal room they spoke to her about a life she might not see.

“I would talk with her about the days we had to go. We set up an email ac­count where I would send emails of things I wanted her to know,” Aly says.

“I told her about fam­ily mem­bers, hopes and dreams for her, what her name meant, how I was feel­ing.”

Tia-Jane was an IVF baby, and her par­ents’ last chance for a child to­gether.

Ul­tra-cau­tious, they hardly left home in the early weeks of the preg­nancy. Then, at the 20-week scan, the sono­g­ra­pher stopped push­ing the probe over Aly’s belly and said, “can you just wait here a mo­ment?”

The prob­lem: a short­ened cervix, which greatly in­creases the risk of mis­car­riage or very pre­ma­ture birth.

Aly was soon in hos­pi­tal and be­ing told birth would most prob­a­bly come too early for re­sus­ci­ta­tion to be at­tempted.

Even if it could be, there was a high chance Tia-Jane would die or be left with ma­jor dis­abil­ity.

The cou­ple de­clined ter­mi­na­tion. Ly­ing on an an­gle and try­ing not to move, Aly tried to put on a brave face for Adrian. But the minute-by-minute pres­sure of the sit­u­a­tion was ex­tra­or­di­nary.

“Adrian washed my hair. He gave me show­ers. It’s re­ally em­bar­rass­ing, but he’d empty my bag, be­cause I had a catheter in for the en­tire time.

“I felt like I was los­ing my mind. You are ly­ing there, you have no fresh air . . . on that last day I said to Adrian, ‘You’ve got to take me out­side, I’ve got to get out.’”

Steroids sped the pro­duc­tion of a protein that pre­pares the baby’s lungs for breath­ing. Then Tia-Jane’s foot went through her mum’s cervix and “hold her in” turned to “get her out”.

Tia-Jane was born at 2.36am on June 15, 2015, just a cou­ple of hours past 23 weeks, weigh­ing 516 grams.

Ex­tremely prem ba­bies pro­vide a win­dow to the womb — Tia-Jane’s eyes were fused shut, her eye­brows still on the side of her head, her skin translu­cent, with­out the pig­men­ta­tion that comes later in ges­ta­tion.

Adrian saw his just-born daugh­ter whisked to a ta­ble. Doc­tors tipped back her head. Once. Twice. On the third try they got the breath­ing tube down. Oxy­gen in­flated tiny, flu­id­filled lungs.

“It was one of the scari­est things I’ve ever seen,” he says. “But amaz­ing all at the same time.”

TIA-JANE WAS born at the edge of vi­a­bil­ity, New Zealand’s small­est and most pre­ma­ture baby to sur­vive.

Doc­tors al­most al­ways re­sus­ci­tate from 25 weeks and never ear­lier than 23. Each baby in the in-be­tween “grey zone” is a ques­tion — try for life, or give pal­lia­tive care?

Par­ents make one of the hard­est de­ci­sions of their lives, in shock and of­ten with lit­tle time amid a blur of med­i­cal ad­vice.

The chance of sur­vival can be slim, and brings with it the pos­si­bil­ity of con­di­tions re­quir­ing life­long care,

It was one of the scari­est things I’ve ever seen. But amaz­ing all at the same time. Adrian McVeigh

in­clud­ing cere­bral palsy, blind­ness and deaf­ness.

In­fants can en­dure weeks of in­va­sive treat­ments only to die. The act of re­sus­ci­ta­tion is a trauma in it­self, and may be a child’s only, fleet­ing ex­pe­ri­ence of the world.

Birth weight and steroids be­fore de­liv­ery can make a cru­cial dif­fer­ence to the chance of sur­vival.

A Week­end Her­ald in­ves­ti­ga­tion can re­veal an­other, more dis­turb­ing cir­cum­stance: skin colour.

Ba­bies of cer­tain eth­nic­i­ties are sig­nif­i­cantly less likely to be re­sus­ci­tated — and ex­perts think racial bias is at least partly to blame.

That bomb­shell dis­cov­ery emerges from a close look at a decade of data for Kiwi ba­bies born from 23-26 weeks.

Re­sus­ci­ta­tion was tried on 92 per cent of Ma¯ori ba­bies, 89 per cent of Pa­cific, and 86 per cent of In­dian. That com­pared to 95 per cent for “other”, mostly Pa¯keha¯ and nonIn­dian Asians.

The di­vides were out­lined in a re­port to Health Min­is­ter David Clark from the Peri­na­tal and Ma­ter­nal Mor­tal­ity Re­view Com­mit­tee, a tax­payer-funded watch­dog tasked with re­view­ing deaths of ba­bies and mothers.

“Ma¯ori, Pa­cific and In­dian live­born ba­bies were sta­tis­ti­cally sig­nif­i­cantly less likely to have an at­tempt at re­sus­ci­ta­tion,” the com­mit­tee stated. “In­sti­tu­tional bias or im­plicit bi­ases are likely to play at least some part.”

Ex­tremely pre­ma­ture Ma¯ori and Pa­cific ba­bies are also less likely to sur­vive their first four weeks, even af­ter ac­count­ing for fac­tors like mother’s age, weight, smok­ing and so­cioe­co­nomic sta­tus.

That “sug­gests there were other fac­tors in­creas­ing risk for these women”, the com­mit­tee stated.

There’s a sim­i­lar search for an­swers in the US, where AfricanAmer­i­can in­fants are more than twice as likely to die as white ba­bies.

Poverty can’t fully ex­plain the gap. African-Amer­i­can women with ad­vanced ed­u­ca­tion, like doc­tors and lawyers, are more likely to lose ba­bies than white high school dropouts.

The 1990s saw a hunt for genes linked to pre­ma­ture birth, but there’s cur­rently in­ter­est in a “weath­er­ing” hy­poth­e­sis — that a life­time of dis­crim­i­na­tion dam­ages women’s health and makes early birth more likely.

In New Zealand, a ground­break­ing study has found ev­i­dence of eth­nic bias among fi­nal-year med­i­cal stu­dents at the Univer­sity of Auck­land and the Univer­sity of Otago.

The re­search, re­ported here for the first time, ex­am­ined both ex­plicit (in­ten­tional) and im­plicit or un­con­scious bias (au­to­matic and out­side aware­ness).

On­line test­ing in­cluded re­ac­tion to hy­po­thet­i­cal men­tal health and heart dis­ease pa­tients. Sur­names — Wiremu/Wil­liams or Tipene/ Stephens — in­di­cated eth­nic­ity, with all other vi­gnette de­tails iden­ti­cal.

Stu­dents were also probed on their ex­pec­ta­tions of the pa­tient — how likely they were to un­der­stand med­i­cal ad­vice or refuse treat­ment.

On av­er­age, there was im­plicit bias to­ward Pa¯keh¯a, and stu­dents rated Ma¯ori less likely to take pre­scribed an­tide­pres­sants.

Real-life pres­sure would likely draw out more bias. “There is ev­i­dence to sup­port the no­tion that stereo­types and bi­ases are in­voked more in sit­u­a­tions of high cog­ni­tive load,” the au­thors, co-led by Univer­sity of Otago aca­demics Dr Donna Cor­mack and Dr Ricci Har­ris, wrote.

Could doc­tors’ in­grained, un­con­scious bi­ases make them less likely to push for re­sus­ci­ta­tion if a baby is brown?

No, says Dr John Tait, chair­man of the mor­tal­ity re­view com­mit­tee and chief med­i­cal of­fi­cer at Welling­ton’s Cap­i­tal & Coast DHB.

“The bias doesn’t come into the ac­tual act of re­sus­ci­ta­tion. No baby wouldn’t be re­sus­ci­tated be­cause of its eth­nic­ity.” Rather, bias could strike ear­lier in the chain of events and ex­plain why more Ma¯ori, Pa­cific and In­dian women have ba­bies whose con­di­tion, such as birth weight, makes re­sus­ci­ta­tion less vi­able.

“The fact they’re in those cir­cum­stances is where the un­con­scious bias is,” Tait told the Week­end Her­ald.

“Is enough ef­fort go­ing into Ma¯ori and Pasi­fika health to pre­vent them go­ing into labour early? If peo­ple don’t at­tend an­te­na­tal clin­ics, it may be they can’t af­ford the bus . . . should we be go­ing to them?

“There’s no de­lib­er­ate bias. But there’s that un­der­ly­ing bias for years that’s led to poor Ma¯ori health out­comes, and poor Pasi­fika out­comes as well.”

As well as the re­sus­ci­ta­tion skew, the com­mit­tee found Ma¯ori, Pa­cific and In­dian women had worse ac­cess to an­te­na­tal care and large hos­pi­tals, where spe­cial­ists work.

They were also less likely to be given an­te­na­tal steroids, of the type

that helped ma­ture Tia-Jane’s lungs.

Ul­ti­mately, par­ents of grey-zone ba­bies de­cide on re­sus­ci­ta­tion af­ter talks with the neona­tal pe­di­a­tri­cian and ob­ste­tri­cian. Could doc­tors’ bi­ases af­fect those dis­cus­sions?

“That is al­ways a pos­si­bil­ity,” Tait says. “We are still look­ing through the lens of Pãkehã whereas the lens of Mãori may be quite dif­fer­ent. And that may have an ef­fect on the abil­ity to com­mu­ni­cate.”

The com­mit­tee has rec­om­mended com­pul­sory cul­tural com­pe­tency train­ing for the en­tire ma­ter­nity and neona­tal work­force.

This should ex­plic­itly “ad­dress aware­ness of, and strategies to re­duce and min­imise the im­pact of, im­plicit bias and racism”.

Med­i­cal and mid­wifery coun­cils al­ready re­quire such train­ing, and po­lice re­cruits are now put through “aware­ness train­ing” to com­bat bias.

Po­lice Com­mis­sioner Mike Bush has said un­con­scious bias could con­tribute to Mãori over-rep­re­sen­ta­tion in of­fender statis­tics.

In the US, Star­bucks put 175,000 em­ploy­ees through “anti-bias train­ing”, af­ter work­ers in a store wrongly called po­lice on two cus­tomers.

Videos shown on iPads in­cluded his­toric civil rights marches, and work­ers were asked ques­tions in­clud­ing when they first no­ticed their own racial iden­tity.

PER­SONAL EX­PE­RI­ENCE means Keri Thomp­son isn’t sur­prised by the re­sus­ci­ta­tion di­vide.

“The hor­ri­ble part is it should shock me,” she told the Week­end Her­ald.

Thomp­son’s son Anaru Thomp­son Adams, now 22 and study­ing law, was born at 24 weeks. Be­fore de­liv­ery, doc­tors ran over what could hap­pen, in­clud­ing re­sus­ci­ta­tion. There was talk of blind­ness and other dis­abil­ity.

“I kind of re­mem­ber what things I was told, but I didn’t know what I was agree­ing to.

“Tech­ni­cally you just re­mem­ber, ‘Please, keep my baby alive’.”

Anaru spent his first six months in Waikato Hos­pi­tal’s neona­tal in­ten­sive care unit (NICU), bat­tling a lung con­di­tion. His heart and breath­ing stopped on three dif­fer­ent oc­ca­sions, but doc­tors brought him back.

Thomp­son re­mains grate­ful for the med­i­cal care re­ceived, but said at times she and her wha¯nau felt “like aliens” and “cul­tur­ally in­ept”.

In one ex­am­ple, she said a doc­tor bluntly told her Anaru was less likely to live be­cause he was Mãori and a boy.

“They had a lot of med­i­cal rea­sons . . . that it was about our phys­i­ol­ogy — our breath­ing air­ways.

“We got the best med­i­cal care that was on of­fer at the time. I have no com­plaints. But the judg­ments that come with that care . . . ”

(Boys do worse than girls, but this shouldn’t en­ter doc­tors’ de­ci­sion­mak­ing. The al­leged claim about Mãori phys­i­ol­ogy is in­cor­rect.)

Thomp­son re­alised that her ex­pe­ri­ence wasn’t an iso­lated one; sub­se­quent in­ter­views with Mãori about their time in Waikato’s NICU formed a 2009 the­sis.

Prob­lems in­cluded strict vis­it­ing pol­icy not recog­nis­ing that whã­nau ex­tends be­yond the no­tion of a nu­clear fam­ily. One in­ter­vie­wee re­called how staff wouldn’t use her baby’s Mãori name.

Rel­a­tively small ac­tions could ei­ther de­mor­alise or lift up, Thomp­son said.

“You’re away from your own fam­ily. You may not have a lot of money and come from out of town. And you add the cul­tural dif­fer­ences — miss­ing out on karakia, all that sort of stuff

that would nat­u­rally hap­pen.”

One way to bridge such di­vides is to have a work­force as di­verse as those be­ing treated.

Al­most one in five Ki­wis will be Mãori by 2025, but to match that share of the work­force would re­quire a fur­ther 3000 nurses, 2510 doc­tors,

380 den­tists and 320 mid­wives. Auck­land DHB has re­sponded with a rad­i­cal change.

All el­i­gi­ble Mãori and Pa­cific job can­di­dates are now au­to­mat­i­cally fast-tracked straight to in­ter­view.

If they’re not hired, man­agers must give spe­cific feed­back to HR, so the un­suc­cess­ful can­di­date can be coached to im­prove their chances in fu­ture in­ter­views.

A new as­sess­ment tool prompts in­ter­view­ers to think about “re­flect­ing our com­mu­ni­ties and pri­ori­tised health out­comes”, along with tra­di­tional skills and ex­pe­ri­ence.

The pol­icy be­gan in June, but has es­caped wider at­ten­tion.

Fiona Michel, chief HR of­fi­cer at Auck­land DHB, says more Mãori and Pa­cific can­di­dates were be­ing in­ter­viewed and hired.

“No one is em­ployed just be­cause of their cul­tural back­ground.

“Can­di­dates need to meet the core cri­te­ria.

“We are al­ways look­ing to re­cruit the best per­son over­all for the job.”

The change has sim­i­lar­i­ties to the NFL’s “Rooney Rule”, which since

2003 has re­quired teams in the US com­pe­ti­tion to in­ter­view at least one mi­nor­ity can­di­date for head coach­ing open­ings.

It’s been mir­rored in the US pri­vate sec­tor in­clud­ing by on­line re­tail gi­ant Ama­zon, de­spite de­ri­sion as in­ef­fec­tive box-tick­ing by some.

Jo Bax­ter, As­so­ciate Dean (Mãori) at Univer­sity of Otago, said hir­ing strategies made sense, given other DHBs were eye­ing the same lim­ited pool of can­di­dates.

“It may not be an af­fir­ma­tive ac­tion thing. This may ac­tu­ally be, ‘Can we get in early and get these ones be­fore some­one else snaf­fles them?’”

Bax­ter, di­rec­tor of a unit aim­ing to grow the num­ber of Ma¯ori health sci­ence grad­u­ates, said not hav­ing Mãori and oth­ers “in the room” dur­ing de­ci­sion-mak­ing hurt those groups.

For ex­am­ple, aged care ser­vices can ig­nore the fact that Mãori die much younger, mean­ing the needy miss out de­spite be­ing near the end of life.

More re­search was needed to un­der­stand the re­sus­ci­ta­tion di­vide, Bax­ter said. How­ever, up­ping cul­tural aware­ness was “low-hang­ing fruit” in health.

“Some peo­ple in my gen­er­a­tion make com­ments which make you think, ‘Gosh, I don’t know if I would want to be their pa­tient’. Will they make a judg­ment that this per­son de­serves or doesn’t de­serve a par­tic­u­lar treat­ment? You know it hap­pens.”

SUR­VIVAL FOR our tini­est ba­bies can hinge on post­code as well as eth­nic­ity.

Pal­lia­tive care is nor­mally given to ba­bies born at 23 weeks at some hos­pi­tals, in­clud­ing Mid­dle­more.

Par­ents hold their child as long as they are alive, and be­yond. Bap­tisms or other rit­u­als can be ar­ranged.

Welling­ton and Dunedin stand out be­cause doc­tors try to re­vive the vast ma­jor­ity of ba­bies born that early.

That helped save 36 ba­bies over the past decade at those two hos­pi­tals. Twenty-nine died.

By com­par­i­son, the 23-week sur­vival rate at Mid­dle­more is 14 per cent.

Welling­ton and Dunedin’s re­sults aren’t tem­pered by higher rates of se­ri­ous dis­abil­ity, and a sec­tor work­ing group in­clud­ing spe­cial­ists and ob­ste­tri­cians is now con­sid­er­ing align­ing prac­tice across the coun­try.

Mean­while, word of the re­gional dif­fer­ences has seen at least one fam­ily move.

A friend of Aly McVeigh in Hamil­ton knew she could have a pre­ma­ture birth and moved to Welling­ton just in case. She gave birth at 23 weeks and, like Tia-Jane, her daugh­ter was re­sus­ci­tated and sur­vived.

But that’s im­pos­si­ble for women who don’t have warn­ing.

It also takes money — and 40 per cent of very early ba­bies are born into the most de­prived fam­i­lies.

The Week­end Her­ald asked DHBs for NICU re­sus­ci­ta­tion and sur­vival rates by eth­nic­ity, in­for­ma­tion not de­tailed by the mor­tal­ity re­view com­mit­tee.

Re­sponses show how Mãori, Pa­cific and In­dian fam­i­lies take the bur­den of ex­tremely pre­ma­ture birth.

They ac­counted for 85 per cent of births at 23 weeks in Coun­ties-Manukau, for ex­am­ple, with fewer than one in five sur­viv­ing.

The DHB doesn’t re­sus­ci­tate from 23 weeks to 23 weeks and six days, un­less, af­ter coun­selling, the fam­ily is adamant.

In Welling­ton, with its ag­gres­sive re­sus­ci­ta­tion pol­icy, more than 40 per cent of Mãori, Pa­cific and In­dian ba­bies born in that age range sur­vived.

DHBs warned that re­gional com­par­i­son was fraught be­cause of small num­bers not ad­justed for fac­tors like de­pri­va­tion.

Dr John Tait agreed, but sup­ports a na­tional ap­proach. His com­mit­tee has asked NI­CUs to “in­ves­ti­gate and ad­dress” re­gional dif­fer­ences in sur­vival rates.

“You would hope, in a coun­try of this size, there wouldn’t be much vari­a­tion and they would all man­age and look af­ter peo­ple in a sim­i­lar way,” he said.

TIA-JANE STARTED ko­hanga reo the

week be­fore the Week­end Her­ald vis­ited in Welling­ton’s Broad­mead­ows.

Peppa Pig kept the 3-year-old oc­cu­pied dur­ing the in­ter­view. She wears glasses and has had mi­nor hear­ing is­sues, but oth­er­wise you wouldn’t know about her ex­tra­or­di­nary begin­ning to life.

Her best friend is an­other 23weeker. Their par­ents call them twin­nies. Sur­vivors. Both Mãori. Bri­tish, Swedish and Kiwi doc­tors cared for them.

Staff “treated us so well”, Aly says. Com­mu­ni­ca­tion at such a stress­ful time was crit­i­cal, given how easy it was to mis­con­strue what was said or done.

Age comes into that as much as eth­nic­ity or cul­ture, Aly says. She had her son at 19, and Tia-Jane 20 years later. “My ma­tu­rity level was a lot dif­fer­ent . . . I wasn’t in­ter­ested in a ca­reer, go­ing out, I wasn’t miss­ing out on study. So my en­tire fo­cus and time was on Tia-Jane.

“It’s about sup­port net­works. I saw a few young ones in there who had a lot of fam­ily around, al­most ev­ery day. And you can see the out­come for those fam­i­lies was dif­fer­ent.”

Whether their own daugh­ter would live wasn’t al­ways clear, es­pe­cially early on in her 137 days in in­ten­sive care.

“It’s about ev­ery minute. You want to be there, you want to have sung her songs,” Aly said.

“We would go down in the mid­dle of the night and read her a story.”

The big mo­ment came when con­sul­tant neona­tol­o­gist Dr Max Berry stopped Aly and Adrian in a hall­way.

“She said, ‘Well, I hope you have her room ready’. At the time you are in this mode of ev­ery day counts. When she said that a light went on.

“I had taken noth­ing out of the cup­board. I didn’t even have a teddy bear on the bed. I even re­fused to set up her cot, be­cause if she wasn’t com­ing home I didn’t want to have any­thing to break down. I must have gone away and cried for a good 20 min­utes af­ter that.”

You would hope, in a coun­try of this size, there wouldn’t be much vari­a­tion and they would all man­age and look af­ter peo­ple in a sim­i­lar way.

Dr John Tait

Photo / Mark Mitchell

Tia-Jane McVeigh, with her par­ents Aly and Adrian, was born in Welling­ton Hos­pi­tal at just 23 weeks. She has now started ko­hanga reo.

Source: Peri­na­tal and Ma­ter­nal Mor­tal­ity Re­view Com­mit­tee / Her­ald graphic

Dr John Tait, chair of the Peri­na­tal and Ma­ter­nal Mor­tal­ity Re­view Com­mit­tee and Chief Med­i­cal Of­fi­cer at Cap­i­tal & Coast DHB, in Welling­ton Hos­pi­tal’s NICU. He is stand­ing next to a baby that was born at 24 weeks.

Keri Thomp­son’s son Anaru was born ex­tremely pre­ma­turely, and she sub­se­quently did re­search on Ma¯ori women’s ex­pe­ri­ences of Waikato’s neona­tal in­ten­sive care unit.

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