‘True knot’ warn­ing

Cou­ple raise aware­ness of rare con­di­tion af­ter daugh­ter’s tragic death in womb.

The Hastings Mail - - FRONT PAGE - JAMES PAUL

Hawke’s Bay baby Harper Jean El­liot should have re­cently notched up her first month of life.

Her par­ents say she would have grown up to be­come a well­known ath­lete. In­stead, she died be­fore she was born due to a rare phe­nom­e­non that oc­curs any­where be­tween 0.3 to 2.1 per cent of all de­liv­er­ies.

‘‘It is the worst pain I’ve ever felt in my en­tire life,’’ dad Steve El­liot said.

Harper had a knot in her un­usu­ally long 81cm um­bil­i­cal cord. De­scribed as a true knot, it re­stricts blood flow to the foe­tus, caus­ing death.

True knot di­ag­no­sis is hard to come by; reg­u­lar ul­tra­sound pro­duce pic­tures that help ex­am­ine a baby us­ing sound waves. But it can’t de­ter­mine if a baby is get­ting enough blood.

Par­ents must opt to un­der­take a colour doppler foetal mon­i­tor­ing scan, which mea­sures the blood flow through the um­bil­i­cal cord and around dif­fer­ent parts of an un­born child’s body.

The prob­lem for Hast­ings par­ents Kirsten Par­cell and El­liot, they said, is they weren’t told about the doppler scan.

‘‘Had we known, then we would have asked to have it per­formed.

‘‘We are con­fi­dent that our baby would have been born alive,’’ El­liot said.

They don’t want their first child’s death to be in vain, and are throw­ing their en­ergy into rais­ing aware­ness about the dif­fer­ent scans avail­able.

There were 17 deaths from a true knot in the cord over nine years from 2007 to 2017, ac­cord­ing to a re­port pre­sented to the Health Qual­ity and Safety Com­mis­sion New Zealand in 2017.

The Peri­na­tal and Ma­ter­nal Mor­tal­ity Re­view Com­mit­tee’s 11th an­nual re­port iden­ti­fied the event oc­curred in about 1 in 32,000 births.

A New Zealand Col­lege of Mid­wives spokesper­son said mid­wives would nor­mally iden­tify a true knot fol­low­ing the birth.

‘‘The un­ex­pected death of a baby is deeply dis­tress­ing for the woman, her fam­ily and the health pro­fes­sion­als in­volved.

‘‘A true knot in the cord is an un­pre­ventable and rare event, which is dif­fi­cult to iden­tify dur- ing preg­nancy.

‘‘Not all true knots in the cord re­sult in the loss of the baby, with many ba­bies born healthy and with­out any signs of dis­tress.’’

Twenty-two days af­ter cre­mat­ing Harper, the Hast­ings cou­ple shared their har­row­ing ex­pe­ri­ence in a video on Face­book.

Par­cell de­scribes the preg­nancy as ‘‘fairly un­der­whelm­ing’’ - reg­u­lar scans iden­ti­fied noth­ing to worry about, the baby was ac­tive.

But that changed on De­cem­ber 29. Par­cell told her mid­wife dur- ing a reg­u­lar ap­point­ment that there was ‘‘re­duced move­ment’’. Alarmed, the mid­wife in­sisted they go to hos­pi­tal im­me­di­ately.

A mon­i­tor showed a vary­ing fluc­tu­a­tion in the baby’s heart rate, El­liot said. Med­i­cal staff told the par­ents that the ris­ing heart rate was due to in­creased ac­tiv­ity, and that the baby was fine.

The baby wasn’t mov­ing the fol­low­ing day, and af­ter three scans, doc­tors an­nounced the lifechang­ing news. El­liot now knows his baby ‘‘was dy­ing in front of us’’ the day be­fore.

‘‘She was strug­gling for oxy­gen right in front of our eyes.’’

Twenty-six hours later, on New Year’s Eve, Par­cell gave birth. ‘‘We were dev­as­tated. I felt shat­tered; men­tally, emo­tion­ally, phys­i­cally,’’ she said.

‘‘If we can help even just one baby from suf­fer­ing the same fate as ours, then Harper would not have died in vain.’’

Their Face­book video has since been viewed more than 160,000 times, and they even Face­book mes­saged Prime Min­is­ter Jacinda Ardern, ad­vo­cat­ing that true knot be screened more thor­oughly.

The ‘true knot’ can be seen in the um­bil­i­cal cord.

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