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Jamaica Gleaner - - NEWS - Er­ica Virtue Se­nior Gleaner Writer er­ica.virtue@glean­erjm.com

Par­ents mak­ing heavy sac­ri­fices to care for chil­dren with mi­cro­cephaly

PAR­ENTS RAIS­ING chil­dren with mi­cro­cephaly – an ab­nor­mal growth of the brain and stunt­ing of the growth of the head of the foe­tus, aris­ing from in­fec­tion in the first months of preg­nancy – are mak­ing heavy sac­ri­fices for these chil­dren who re­quire spe­cial care through­out their life­time.

For­mer chair­man of the Med­i­cal As­so­ci­a­tion of Ja­maica (MAJ), Dr Shane Alexis, and the cur­rent chair­man, Myr­ton Smith, used a re­cent Gleaner Ed­i­tors’ Fo­rum to out­line the pres­sure faced by par­ents whose chil­dren have this birth de­fect.

“Car­ing for a child with mi­cro­cephaly is re­ally hard. These chil­dren grow and I have seen par­ents try­ing to lift them up. It’s all well and good when they are small and are eas­ier to carry around. When they get big­ger, real prob­lems present them­selves, it be­comes a labour of love,” said Alexis.

“The mi­cro­cephalic child re­quires a lot of at­ten­tion, hugs and kisses. Don’t just fo­cus on the head alone. There are many other is­sues which will re­quire vis­its to spe­cial­ists. Our hos­pi­tal net­work only has spe­cial­ists at cer­tain clin­ics.

“That means you have to tra­verse parishes in one day to get treat­ment. Each clinic has a dif­fer­ent day so that’s sev­eral days,” added Alexis.

ECO­NOMIC IM­PACT

He ar­gued that some par­ents may not be able to earn a liv­ing Nor­mal baby ver­sus baby with mi­cro­cephaly.

ALEXIS

to take care of the child, be­cause of the spe­cial needs of some­one with mi­cro­cephaly.

“So if you mul­ti­ply the num­ber of chil­dren with this for the last 10 years, given all the things we men­tioned be­fore, then you will see the eco­nomic im­pact on these fam­i­lies.

“Work­ing at the Bus­ta­mante Hos­pi­tal for Chil­dren, see­ing these chil­dren and get­ting to know the par­ents over time, it’s a real labour of love. It’s a fan­tas­tic thing to ob­serve them and the con­nec­tion they have with the child that many of us may not un­der­stand.

“And the sup­port ser­vices such as schools, day care, all have an eco­nomic im­pact on the fam­i­lies. So it’s not just a med­i­cal im­pact. It has an eco­nomic im­pact,” noted the for­mer MAJ pres­i­dent.

For Smith, who is an ear, nose and throat (ENT) spe­cial­ist, treat­ing chil­dren with mi­cro­cephaly re­quire spe­cial med­i­cal care, es­pe­cially in the parts of the body in which he spe­cialises.

“Many times, these chil­dren need spe­cial at­ten­tion, and there is an ad­di­tional cost to this. But if you want to get the best out of them you have to fo­cus on the spe­cial ed­u­ca­tion that is needed to max­imise their po­ten­tial,” said Smith as he brought the fo­rum’s at­ten­tion to a mi­cro­cephalic young blog­ger, whose po­ten­tial was be­ing re­alised.

SUR­GI­CAL CHAL­LENGES

“Work­ing in ENT and head and neck, there are times when we have to do a pro­ce­dure on child with a con­gen­i­tally small head in or­der to fa­cil­i­tate not just how the child looks, and which brings with it sur­gi­cal chal­lenges.

“The air­way is usu­ally smaller, so some­times we have to ex­pand the head in or­der to in­crease the air­ways. These are some other is­sues that can arise,” ex­plained Smith.

Due to the out­break of the mos­quito-borne Zika virus (ZIKV) in more than 26 coun­tries, in­clud­ing Ja­maica, se­ri­ous con­cerns have been raised about the virus’ link to mi­cro­cephaly – an ab­nor­mal growth of the brain and stunt­ing of the growth of the head of the foe­tus.

Ba­bies who de­velop mi­cro­cephaly in the womb may not live to full term and may be born pre­ma­turely, still­born or sur­vive with life­long dis­abil­i­ties.

Ac­cord­ing to avail­able data, be­tween 2009 and Oc­to­ber 2015, Ja­maica recorded 35 cases of mi­cro­cephaly. There were six cases in 2009; 10 in 2010; four in 2011; seven in 2012; six in 2013; and one case each in 2014 and 2015.

Becky’s se­vere vomiting caused the wor­ry­ing mother to rush to her daugh­ter’s pri­mary school.

“I took her to the hos­pi­tal. They said she had gas­troen­teri­tis. But that lasted the en­tire week. The numbness got worse. And then she stopped walk­ing be­cause she could not even stand. I waited for more than two hours with­out see­ing any­one at the hos­pi­tal, af­ter which time I left be­cause she was in pain all over her body. Then I took her to her pae­di­a­tri­cian who re­ferred me to hos­pi­tal,” said Joy.

Ac­cord­ing to Joy, when her daugh­ter was ad­mit­ted to hos­pi­tal her worry turned to hor­ror.

“I thought she had a stroke when she couldn’t move her right side. When she was fi­nally able to move, she be­gan hop­ping around on her left foot, re­sult­ing in a slight sprain of the an­kle,” said Joy.

She charged that ini­tially there was a down­play­ing of her daugh­ter’s ill­ness at the hos­pi­tal.

“They told me she was fak­ing the paral­y­sis and wanted her to see a psy­chi­a­trist. Then they said her de­meanour and be­hav­iour sug­gest she was be­ing abused. Then they dis­charged her af­ter two days, say­ing noth­ing was wrong

RE­PORT ON SUS­PI­CION

with her.

“Dur­ing the time she was in the hos­pi­tal they gave her noth­ing more than Panadol for the pain, even while she could not walk or help her­self,” Joy charged. Then came the dreaded di­ag­no­sis that the child had GBS, which is one of the com­pli­ca­tions linked to the Zika virus.

Up to the start of this month, the Min­istry of Health was re­port­ing that there were 111 no­ti­fi­ca­tions for pos­si­ble GBS. Twenty-two of those cases have been clas­si­fied by the min­istry as sus­pect while two per­sons with GBS have died.

Twenty cases have been clas­si­fied as non-GBS, while 69 no­ti­fi­ca­tions were still un­der in­ves­ti­ga­tion.

COM­PLI­CA­TIONS

Ac­cord­ing to the min­istry, mor­tal­ity as­so­ci­ated with GBS varies by sub­pop­u­la­tion, and an es­ti­mated five per cent of in­di­vid­u­als di­ag­nosed may die from com­pli­ca­tions de­spite re­ceiv­ing ad­e­quate care.

For Joy, there were prayers and tears for what she de­scribes as her daugh­ter’s “mirac­u­lous re­cov­ery”, although Becky still re­quire spe­cial­ist care.

“She missed a lot of school at a time when she was pre­par­ing for the Grade Four Lit­er­acy Test. When she was un­able to walk, it was pig­gy­back trans­porta­tion. I had to carry her around to and from school.

“When I went to school the se­cu­rity guard would help me carry her up the stairs to the class­room, and she would re­main there un­til I come to pick her up. This is af­ter the hos­pi­tal said she was fak­ing the ill­ness,” said Joy.

“We lived on a lot of prayers. We lived with faith and prayers. We are a very feisty fam­ily and a very tight fam­ily. She is walk­ing now. She ac­tu­ally au­di­tioned for a part in a play and got it. It’s not a sad story when it comes to Becky,” said the ex­hausted mother.

* Names changed on re­quest AS PART of its over­all surveil­lance of Zika and Zika-re­lated ef­fects, the Min­istry of Health has in­di­cated that all mi­cro­cephaly, Guil­lain-Barre syndrome and neu­ro­log­i­cal con­di­tions that may be re­lated to Zika virus in­fec­tion are to be re­ported on sus­pi­cion as they may be re­lated to Zika virus in­fec­tion.

Ac­cord­ing to the min­istry, Zika virus in­fec­tion re­mains a Class 1 no­ti­fi­able dis­ease and all sus­pected cases are to be re­ported to the Parish Health De­part­ment or the Na­tional Surveil­lance Unit at the Min­istry of Health.

This rec­om­men­da­tion, which forms part of the clin­i­cal man­age­ment and surveil­lance guide­lines, was re­it­er­ated by the Ex­pert Group on Chil­dren of Moth­ers with Sus­pected/Con­firmed ZIKV In­fec­tion at their sec­ond meet­ing last Wed­nes­day.

Ac­cord­ing to Min­is­ter of Health Dr Christo­pher Tufton, “This is just one of the many rec­om­men­da­tions that will be mon­i­tored by this ex­pert group, and the ex­pec­ta­tion is that by the end of Septem­ber 2016 the ca­pac­ity of the pub­lic-health sys­tem will be in­creased to deal with ba­bies born with mi­cro­cephaly and other neu­ro­log­i­cal dis­or­ders.”

SMITH

TUFTON

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