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Cytomegalovirus: remote nurses key to early detection

14 Aug 2023

How much do you know about CMV? As the first port of call for antenatal screening in much of remote Australia, nurses are key to early detection and treatment. So urges remote area nurse Mel Howard, following her eye-opening experiences on the “other side of healthcare” with her second son Huey.

Remote area nurse Mel Howard gave birth to her sec­ond son at 34 weeks.

At 20 to 26 weeks, rhe­sus isoim­mu­ni­sa­tion had occurred, despite anti‑D injec­tions. Huey need­ed a full blood trans­fu­sion when he was born and spent 8 days in NICU.

It was the begin­ning of a rocky jour­ney for Huey, who expe­ri­enced a range of health issues dur­ing his first years – includ­ing peri­ods of apnea, pneu­mo­nia which esca­lat­ed into bron­choma­la­cia, menin­gi­tis, issues with bal­ance and immunosuppression. 

Mel knew some­thing was wrong and as she strug­gled to con­nect the dots, she and her part­ner Pete moved pro­gres­sive­ly south to be clos­er to the health ser­vices in Perth.

Taswe­gian Mel bid farewell to remote area nurs­ing, hard as it was for her to say good­bye to her adopt­ed home far north of WA’s capital.

The biggest wake-up call for me was when Huey had a bad episode of apnea in the mid­dle of the night. 

I rushed to the clin­ic in my pyja­mas, got tele-health on the screen and said he’s not breath­ing very well, will you help me?’ They said: Where is the nurse?’ And I said, I am the nurse’.

If my child has a res­pi­ra­to­ry arrest here [in a remote area], am I the nurse, or am I the mum?”

It was only lat­er, when Huey was three, that every­thing start­ed to make sense.

I found him stand­ing next to a speak­er one day, lis­ten­ing to music,” Mel says. I asked, what are you doing, sweet­ie?’ And he said, I can’t hear any­thing from this ear any­more, mum’.

I booked him in for a hear­ing test and the week after that he had a hear­ing aid. With­in three months, his hear­ing loss dou­bled and I insist­ed he get an MRI. Six weeks lat­er we received a phone call from his ENT that changed our lives.

His ears are in pris­tine con­di­tion, but his brain, about 35 per cent of his white mat­ter, has been irre­versibly destroyed with wide­spread lesions, cal­ci­fi­ca­tions and cysts.”

The ENT sent through the report and it says imag­ing sug­ges­tive of cytomegalovirus’. 

I was like – what the hell is cytomegalovirus? That was the begin­ning of our CMV journey.”

Cytomegalovirus sits with­in the her­pes fam­i­ly, with seropos­i­tiv­i­ty preva­lence in adult women rang­ing between 40% and 90%.¹

It spreads via infect­ed bod­i­ly flu­ids and though it’s typ­i­cal­ly mild­ly symp­to­matic for adults, it remains dor­mant in a person’s sys­tem for life and may reactivate.

If it’s caught or reac­ti­vates dur­ing preg­nan­cy (due to immuno­sup­pres­sion), con­gen­i­tal cytomegalovirus can occur – as in Huey’s case.

Deter­mined to under­stand her son’s con­di­tion, Mel trav­elled to a CMV con­fer­ence in Cana­da and had a pla­cen­ta sam­ple from birth analysed, con­firm­ing the diagnosis.

Armed with infor­ma­tion, she’s work­ing along-side the CMV com­mu­ni­ty to raise aware­ness – par­tic­u­lar­ly among remote nurs­es, who are often the first port of call for ante­na­tal screening.

CMV is not always dis­cussed by health pro­fes­sion­als of the world because they do not want to increase anx­i­ety dur­ing pregnancy. 

Yet it’s eas­i­ly pre­ventable in preg­nan­cy. Don’t share the spoon with your tod­dler, or if you work in pae­di­atrics or a school or in day­care, use the best hand hygiene you can.

Women deserve to be edu­cat­ed. We deserve to know that if we kiss our oth­er child on the lips when we’re preg­nant, that child might give us CMV and that might affect the preg­nan­cy. Give us the facts and if we still choose to kiss our child on the lips, we’ve made an edu­cat­ed deci­sion,” she says.

CMV should be like rubel­la, like mumps – it shouldn’t exist anymore.”

On top of increased aware­ness, Mel is also advo­cat­ing for increas­ing screen­ing and increased preg­nan­cy mon­i­tor­ing in Aus­tralia, draw­ing inspi­ra­tion from pro­grams being rolled out in the USA and Canada.

CMV is all about ear­ly detec­tion and ear­ly treat­ment,” she says. If we did pick up on [CMV ear­ly], Huey could’ve been on antivi­rals for six months and wouldn’t have had the dam­age he’s had… But that’s okay. It’s hap­pened, it’s done, it’s our path – but I couldn’t get through life with­out try­ing to spread the word.

At the end of the day I’m the luck­i­est woman in the world. He’s a super rare lit­tle bun­dle, a glim­mer of joy.”

Mel’s fam­i­ly have decid­ed to stay with­in dri­ving dis­tance of Perth for Huey’s appoint­ments, but Mel is glad to be fly­ing in and out as a remote area nurse again when the clin­ic is a lit­tle short”.

She’s approach­ing the role with a new energy.

Ear­ly in your nurs­ing career, if a moth­er says there’s some­thing wrong with my child’, you might eye-roll and think anoth­er over­bear­ing moth­er’,” she says. But being on the oth­er side of the health­care sys­tem has been eye-open­ing… There’s some­thing to be said for that parental instinct,” she now firm­ly believes.

If a moth­er presents with con­cern for their child, I doc­u­ment that clear­ly, and if they’re not com­fort­able going home after the assess­ment, then I’ll esca­late it fur­ther and con­tin­ue look­ing into it for them, spend­ing extra time lis­ten­ing and giv­ing them options to return.

Work­ing in emer­gency, you see people’s lives and dreams ripped away from them in a heart­beat… It takes the wind out of you when you’re on the oth­er side, but also makes you appre­ci­ate this job, and the posi­tion we have – to be able to help peo­ple and be there for peo­ple when they need it most.”

To learn more about cytomegalovirus, vis­it Cere­bral Pal­sy Alliance’s web­site to com­plete their free eLearn­ing course on CMV: https://​cere​bral​pal​sy​.org​.au/​e​l​e​a​r​n​i​n​g​-​c​o​u​r​s​e​-​m​i​d​w​ifes/

Ref­er­ences

1. Naing ZW, Scott GM, Shand A et al (2016) Con­gen­i­tal cytomegalovirus infec­tion in preg­nan­cy: a review of preva­lence, clin­i­cal fea­tures, diag­no­sis and pre­ven­tion. Aust N Z J Obstet Gynaecol 56(1): 9 – 18