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.”

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.