‘ In­for­ma­tion is power. In this coun­try, moth­ers are not sup­posed to have power’

The Irish Times Magazine - - NEWS - jo­con­nell@ irish­times. com JEN­NIFER O’CON­NELL

‘ I’ m sorry, but I’m just hav­ing a bit of trou­ble lo­cat­ing a nasal bone.” Time slowed down when she said those words. Our bright and easy con­ver­sa­tion dried up. My hus­band squeezed my hand. “You’re hav­ing trou­ble lo­cat­ing it, or it’s not ac­tu­ally there?” I asked.

She didn’t an­swer. In­stead, she sug­gested I go to the bath­room and get more com­fort­able.

Alone in the bright cu­bi­cle down the cor­ri­dor, I wiped the gel off my newly rounded stom­ach and con­sid­ered what might hap­pen if I just stayed there, if I didn’t re­turn to lie on the PVC chair in the dimly light room, and to my hus­band’s con­cerned, ex­pec­tant face, and to those words that might mean noth­ing, or might change ev­ery­thing.

I didn’t know what “no nasal bone” meant in prac­tice, but I knew it was noth­ing good.

The days that fol­lowed were a blur. There was an ap­point­ment with the con­sul­tant in foetal medicine, where he swiped through page after page on his com­puter screen and used words like “marker for chro­mo­so­mal ab­nor­mal­ity”.

On the com­bined sta­tis­tics, my baby had a one- in- 25 risk of an ab­nor­mal­ity. Con­fus­ingly, on the missing nasal bone alone, the risk of noth­ing be­ing wrong was one in 100. I had a CVS biopsy ( to check for chro­mo­so­mal ab­nor­mal­ity) and turned my face away from the screen so I didn’t have to see the nee­dle pen­e­trate the pla­centa.

In the days af­ter­wards, while I waited for the re­sults, I bought the baby a hamsa hand neck­lace, an an­cient Mid­dle Eastern and north African sym­bol that was sup­posed to bring bless­ings and pro­tec­tion. I walked to a park over­look­ing Sydney har­bour and sat on a bench while peo­ple threw sticks for their dogs, and held the hamsa pen­dant tightly in my hand.

I was still hold­ing it when the call came. I didn’t yet know for cer­tain what I would do. As it hap­pened, I never had to find out. It was good news. A per­fectly healthy lit­tle girl. Five months later, she was born with dark hair and dim­ples and a but­ton nose.

If I had been in Ire­land dur­ing that preg­nancy, I might never have had those days of fear and anx­i­ety. Sta­tis­tics pub­lished re­cently re­vealed that a foetal anom­aly ul­tra­sound at 20- 22 weeks is of­fered uni­ver­sally to all women in only seven of Ire­land’s 19 ob­stet­ric units. It is of­fered se­lec­tively to some women in a fur­ther seven. And in the re­main­ing five units, it is not of­fered at all. Over­all, fewer than two in every three women are given a foetal ab­nor­mal­ity ul­tra­sound and just less than one in two are given a first- trimester ul­tra­sound. If I had been hav­ing my daugh­ter in Ire­land in­stead of Aus­tralia, I might well have been spared the worry and the anx­i­ety. I might not have been trusted with the in­for­ma­tion at all. And some­how, that would have been so much worse. Be­cause even in the worst, dark­est mo­ments, I recog­nised that I was lucky: it was a priv­i­lege to be trusted to make the right de­ci­sion for my­self, for my fam­ily, for my child. When the re­port Ma­ter­nity Ul­tra­sound in the Repub­lic of Ire­land 2016: A Re­view was pub­lished, the re­ac­tion was muted. There was no out­cry, no fury, even though the Royal Col­lege of Ob­ste­tri­cians and Gy­nae­col­o­gists, the Na­tional In­sti­tute for Health and Clin­i­cal Ex­cel­lence and the De­part­ment of Health rec­om­mend the two- stage ul­tra­sound ap­proach. I sup­pose we’re numb to it all, re­signed to be­ing treated like an in­sen­tient, walk­ing uterus. We’re so used to be­ing de­nied au­ton­omy that be­ing de­nied in­for­ma­tion doesn’t seem like such a big deal. In­for­ma­tion is power. In this coun­try, moth­ers are not sup­posed to have power. It is a big deal. In the words of the re­port: “In­ter­na­tion­ally, the widely ac­cepted min­i­mal sched­ule for an­te­na­tal ul­tra­sound com­prises two ex­am­i­na­tions; a dat­ing ul­tra­sound in the late first trimester, fol­lowed by a foetal anom­aly scan, usu­ally per­formed be­tween 20- 22 weeks’ ges­ta­tion.” If a foetal anom­aly is de­tected at this stage, “planned de­liv­ery of the in­fant at the right time and in the cor­rect place can be fa­cil­i­tated, thus en­abling rapid ac­cess to ap­pro­pri­ate neona­tal in­ten­sive care, which may ul­ti­mately re­duce neona­tal mor­bid­ity and mor­tal­ity. Di­ag­no­sis can also pro­vide ad­e­quate time to psy­cho­log­i­cally pre­pare par­ents.” That’s why the UCC pro­fes­sor of ob­stet­rics and con­sul­tant ob­ste­tri­cian and gy­nae­col­o­gist, Louise Kenny, warned ear­lier this year that “ba­bies will and do die as a di­rect re­sult of a lack of ac­cess to ul­tra­sound”. A clue to why there has been such a de­lay im­ple­ment­ing the rec­om­men­da­tions of the De­part­ment of Health – and why there has been no ex­pan­sion in Ir­ish ma­ter­nity ul­tra­sound ser­vices in the past decade – comes else­where in the re­port. “Some ma­jor foetal anom­alies are also de­tectable in the late first trimester and when di­ag­nosed can fa­cil­i­tate parental choice with re­spect to con­tin­u­ing with or ter­mi­nat­ing the preg­nancy.” I still don’t know what I would have done. I was one of the very lucky ones: chance fell on my side, and I didn’t have to find out. But there was com­fort know­ing that, if things had been dif­fer­ent, the choice would have been mine – ours – to make.

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