The ag­o­nis­ing sto­ries of still­birth un­veiled

In­quiry seeks to un­cover why chil­dren con­tinue to die in utero

Sunshine Coast Daily - - NEWS - HAN­NAH BUSCH

BY the end of the day, on av­er­age, six Aus­tralian ba­bies will have been still­born.

It’s a rate that hasn’t changed in more than two decades, de­spite de­creas­ing deaths in other western coun­tries.

Ear­lier this year, the pain of these griev­ing fam­i­lies was laid bare in a se­nate in­quiry that has sought to find out why Aus­tralia’s chil­dren con­tinue to die in utero and in labour at the same rate they did 20 years ago.

Hun­dreds of par­ents made gut-wrench­ing sub­mis­sions to the Se­lect Com­mit­tee on Still­birth Re­search and Ed­u­ca­tion, de­tail­ing the deaths of their chil­dren and pat­terns of care – how few of them were warned about the risks of still­birth dur­ing pre­na­tal care and how the med­i­cal care in the af­ter­math of their loss was of­ten in­sen­si­tive.

As the world marks Preg­nancy and In­fant Loss Aware­ness Month this Oc­to­ber, we spoke to some of the par­ents, in­clud­ing Sunshine Coast mum Paula Dil­lon, who ap­peared as wit­nesses be­fore the se­nate in­quiry.

Annabelle

MIDWIFE Paula Dil­lon knew noth­ing about still­birth be­fore the birth, and death, of her sec­ond daugh­ter Annabelle.

De­spite work­ing in high-risk ob­stet­rics set­tings, she had never been trained in car­ing for preg­nant women whose chil­dren had died.

Her first preg­nancy, with daugh­ter Grace, had been rel­a­tively rou­tine. And un­til the last two days of her preg­nancy, so had Annabelle’s. None of her pri­mary carers or even her mid­wifery teach­ers had ever men­tioned still­birth.

“I had no idea that still­birth is the lead­ing cause of in­fant death in Aus­tralia,” she told the se­nate hear­ing.

“I had no idea that Aus­tralia’s still­birth rate is dou­ble the na­tional road death toll or that it is far more com­mon than SIDS, and I was a midwife.”

Annabelle died at the age of 41 weeks and 6 days on May 21, 2005.

Some­time be­fore her birth, she suf­fered a rare con­di­tion known as mas­sive id­io­pathic feto-ma­ter­nal trans­fu­sion. Her blood sup­ply was spon­ta­neously lost into her mother’s cir­cu­la­tion, killing her.

“It is un­pre­ventable, un­de­tectable and un­treat­able,” Paula told the Daily.

Paula and her hus­band didn’t dis­cover their daugh­ter’s con­di­tion un­til a rou­tine car­diotocog­ra­phy test to record Annabelle’s heart­beat. By the time of the test, the child’s heart had al­ready stopped. She

was still­born one day later in a ma­ter­nity ward of a pri­vate hos­pi­tal.

The af­ter­math of Annabelle’s death ut­terly changed the course of Paula’s ca­reer.

De­liv­ery rooms be­came too con­fronting and she re­turned to work as a nurse, work­ing pri­mar­ily in surg­eries. At the same time, she be­gan vol­un­teer­ing at uni­ver­si­ties. She told Annabelle’s story to classes of would-be mid­wives, some of whom later met and recog­nised her at events and con­fer­ences.

She now reg­u­larly teaches mid­wifery stu­dents and paramedics at the Univer­sity of Sunshine Coast about still­birth and how to help bereaved par­ents.

She is also the Queens­land ed­u­ca­tor for the char­ity Still Aware, and com­pleted a Masters in Mid­wifery in 2014, ex­plor­ing the care and treat­ment around de­creased fe­tal move­ment in the fi­nal stages of preg­nancy.

“I re­alised there was a gap in mid­wifery ed­u­ca­tion,” she said.

“It was great for my heal­ing, and to speak Annabelle’s name.

“It helps midwife stu­dents not to be afraid.

“Annabelle made me a teacher.”

In the years since Annabelle’s death, Paula fell preg Queenslander” nant an­other five times.

The first ended in mis­car­riage at 10 weeks. The sec­ond, at 14 weeks. The third, a girl named Bethanie, died at just 17 weeks old in June 2007.

Though not legally clas­si­fied as still­born, the fam­ily refers to Bethanie as their sec­ond still­born child.

“That’s how I feel Bethanie was,” Paula said.

She re­turned to work as a midwife in 2008.

Two years later, she fell preg­nant again. Eli­jah was their “one last shot” at hav­ing an­other liv­ing child. He was born healthy in 2010.

She calls him her sunshine boy.

It it a per­sonal adap­tion of the term rain­bow child, used some­times by bereaved par­ents who have a liv­ing child af­ter a preg­nancy loss.

“He healed me in ways I can’t wait to tell him about when he is older,” Paula said. “I felt bro­ken as a woman.” Then in 2013, af­ter mov­ing up to Bris­bane, her “sur­prise was born. Lucy, who was Paula’s sev­enth preg­nancy, is now ap­proach­ing her fifth birth­day.

Paula’s place in still­birth ed­u­ca­tion has helped Aus­tralia’s next gen­er­a­tion of mid­wives deal with the fear that sur­rounds still­birth, even among med­i­cal pro­fes­sion­als.

“This is where this se­nate in­quiry comes in,” she said. “Peo­ple are just scared of still­birth. They’re scared of talk­ing about it.

“Thirteen years ago, 14 years ago... I wouldn’t have talked about it.”

She has echoed calls for man­dated stan­dards of care, and be­lieves be­reave­ment mid­wives should be ac­cred­ited through a train­ing pro­gram.

Paula has also ad­vo­cated for bet­ter ed­u­ca­tion for preg­nant women seek­ing med­i­cal care for de­creased fe­tal move­ments and on side sleep­ing in late preg­nancy.

“We are never go­ing to erad­i­cate still­birth,” she said.

“It’s about... how can we make the best ex­pe­ri­ence of the worst day of their life?

“When you are given that sup­port, it def­i­nitely makes that griev­ing eas­ier.”

Oc­to­ber 15 will mark In­ter­na­tional Preg­nancy and In­fant Loss Re­mem­brance Day.

HE HEALED ME IN WAYS I CAN’T WAIT TO TELL HIM ABOUT WHEN HE IS OLDER. I FELT BRO­KEN AS A WOMAN

Photo: Con­trib­uted

TRAGIC LOSS: Lit­tle Annabelle Dil­lon died at the age of 41 weeks and 6 days on May 21, 2005.

Photo: Con­trib­uted

HEART­BREAK: Paula Dil­lon, with her fam­ily, knows the heartache of still­birth and now works to en­sure more ad­e­quate ed­u­ca­tion and un­der­stand­ing.

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