Plan­ning care for Zika ba­bies chal­lenges U.S. health of­fi­cials

The Washington Post - - FRONT PAGE - BY LENA H. SUN

At least 12 ba­bies in the United States have al­ready been born with the heart­break­ing brain dam­age caused by the Zika virus. And with that num­ber ex­pected to mul­ti­ply, pub­lic health and pe­di­atric spe­cial­ists are scram­bling as they have rarely done to pre­pare for the life­long im­pli­ca­tions of each case.

Many of Zika’s lit­tlest vic­tims, di­ag­nosed with mi­cro­cephaly and other se­ri­ous birth de­fects that might not im­me­di­ately be ap­par­ent, could re­quire care es­ti­mated at more than $10 mil­lion through adult­hood. Of­fi­cials who have been con­cen­trat­ing on mea­sures to control and pre­vent trans­mis­sion of the virus are now con­fronting a new chal­lenge, seek­ing to pro­vide guid­ance for doc­tors and oth­ers who work with young chil­dren with devel­op­men­tal prob­lems.

The White House and Cen­ters for Dis­ease Control and Preven­tion are hold­ing reg­u­lar talks with ex­perts and non­prof­its about the ar­ray of ser­vices the in­fants and their fam­i­lies will need well into the fu­ture. Ad­vo­cacy groups are seek­ing to raise

among par­ents and day-care providers, and some high-risk states are stream­lin­ing ex­ist­ing pro­grams so that they can rapidly con­nect Zika ba­bies with phys­i­cal, oc­cu­pa­tional and other ther­a­pies.

On Thurs­day and Fri­day, CDC and the Amer­i­can Academy of Pediatrics con­vened a spe­cial meet­ing in At­lanta to es­tab­lish guide­lines on how to eval­u­ate and care for in­fants whose mothers were in­fected with the virus dur­ing preg­nancy. They heard oph­thal­mol­o­gist Camila Ven­tura of Brazil, the epi­cen­ter of Zika in the Amer­i­cas, de­scribe how ex­tremely ir­ri­ta­ble, even in­con­solable, the new­borns with mi­cro­cephaly are.

“The ba­bies can­not stop cry­ing,” she said.

Just as daunt­ing is the ques­tion of how to best mon­i­tor those ex­posed in utero but with­out ob­vi­ous ab­nor­mal­i­ties at birth. Vi­sion and hear­ing prob­lems can sur­face, as can seizure dis­or­ders.

“That un­cer­tainty and lack of in­for­ma­tion will be very stressful for the fam­i­lies,” CDC physi­cian Kate Rus­sell said.

The ur­gency of these dis­cus­sions in­creased after Congress ad­journed in mid-July with­out tak­ing ac­tion on ad­di­tional Zika fund­ing. Law­mak­ers will not re­turn to Washington un­til Septem­ber.

“Peo­ple have been so fo­cused on preven­tion,” said Katy Neas of Easter Seals, a non­profit that pro­vides ser­vices to chil­dren and adults with dis­abil­i­ties. “Now we’re get­ting to ‘Holy moly, we’re ac­tu­ally go­ing to have kids here with Zika, and what do we need to do?’ ”

Fed­eral and lo­cal health of­fi­cials are mon­i­tor­ing at least 400 preg­nant women with Zika in the 50 states and the District, up from 346 a week ago, and an­other 378 preg­nant women in the U.S. ter­ri­to­ries, most of them in Puerto Rico. In ad­di­tion to the ba­bies al­ready born with Zika-re­lated prob­lems — the lat­est was an­nounced Fri­day by New York City health of­fi­cials — at least six women have lost or ter­mi­nated preg­nan­cies be­cause their fe­tuses suf­fered brain de­fects from the virus.

Florida is in­ves­ti­gat­ing two pos­si­ble cases of lo­cally trans­mit­ted Zika — the first in any state. Should the virus spread there or else­where in the re­gion, it would be the first out­break linked to se­ri­ous birth de­fects since the 1964 rubella out­break that killed 2,100 ba­bies and left 20,000 oth­ers at risk of deaf­ness, heart dam­age and mi­cro­cephaly.

“It’s been more than 50 years since we’ve seen an epi­demic of birth de­fects linked to a virus — and never be­fore have we seen this re­sult from a mos­quito bite,” said Mar­garet Honein, chief of CDC’s birth de­fects branch.

But un­like with rubella, the vast ma­jor­ity of peo­ple with Zika have no symp­toms. That poses enor­mous di­ag­nos­tic chal­lenges be­cause the most ac­cu­rate tests need to oc­cur within the first two weeks of in­fec­tion. Also un­like rubella, re­searchers do not truly know the mag­ni­tude of risk for a preg­nant woman pass­ing Zika to her fe­tus.

“This is new ter­ri­tory,” said Anne Schuchat, CDC’s deputy di­rec­tor, with pub­lic health of­fi­cials si­mul­ta­ne­ously hav­ing to learn about Zika’s grave im­pact on fe­tuses while de­vis­ing in­ter­ven­tions for the con­se­quences. “We’re try­ing to pre­pare our­selves and pre­pare preg­nant women for when those ba­bies are born and what should hap­pen to them.”

In ad­di­tion to mi­cro­cephaly, a rare con­di­tion usu­ally char­ac­ter­ized by an ab­nor­mally small head and un­der­de­vel­oped brain, Zika can cause neu­ro­log­i­cal harm af­fect­ing vi­sion, hear­ing, and mus­cle and bone de­velop-- ment re­search shows. The range of impairment can be vast. Some ba­bies lack the most ba­sic suck­ing re­flex, which means they might never de­velop the abil­ity to swal­low.

Even in ba­bies who look “ab­so­lutely fine” at birth, on­go­ing screen­ing may be nec­es­sary to de­tect sub­tle changes that could sig­nal se­ri­ous prob­lems. Ab­nor­mal move­ment and pro­longed star­ing, for ex­am­ple, could in­di­cate an emerg­ing seizure dis­or­der.

“You have to re­ally fol­low them and check,” ex­plained V. Fan Tait, deputy di­rec­tor of child health and well­ness for the Amer­i­can Academy of Pediatrics. “What do you need to do for the eval­u­a­tion, and who else needs to be in­volved? . . . We know the worst-case sce­nario, but what we don’t know is the con­tin­uum.”

Although the pe­di­atric neu­rol­o­gist ac­knowl­edged that it is un­clear how many chil­dren could be af­fected, “in my mind, it will stretch the sys­tem that we have to care for them,” she said.

Fed­eral law re­quires ev­ery state to have an early in­ter­ven­tion pro­gram that of­fers ser­vices to el­i­gi­ble in­fants and tod­dlers up to 36 months old who have sig­nif­i­cant devel­op­men­tal de­lays or con­di­tions likely to re­sult in such de­lays. The pro­grams, typ­i­cally funded with state and fed­eral dol­lars, rep­re­sent a crit­i­cal sup­port sys­tem for chil­dren with com­plex needs.

In Florida, which has 46 preg­nant women with Zika, of­fi­cials re­cently de­cided that any child with a con­firmed Zika di­ag­no­sis au­to­mat­i­cally qual­i­fies for early screen­ing and in­ter­ven­tion.

“We’re an­tic­i­pat­ing this is go- ing to be a ma­jor prob­lem,” said Charles Bauer, a pro­fes­sor of pediatrics and neona­tol­ogy at the Univer­sity of Mi­ami Mail­man Cen­ter for Child De­vel­op­ment. The univer­sity runs one of the state’s 15 Early Steps pro­grams, and its pe­di­a­tri­cians, psy­chol­o­gists and other spe­cial­ists see more than 3,500 in­fants and tod­dlers a year.

“We’re try­ing to pre­pare our­selves to iden­tify these ba­bies and get them into ser­vices as soon as pos­si­ble,” Bauer said. “This is a new cat­e­gory of at-risk baby.”

Chil­dren in the univer­sity’s pro­gram are eval­u­ated by spe­cial­ists, such as Sil­via Fa­jardo Hiri­art, a pe­di­a­tri­cian, and Michelle Berkovits, a psy­chol­o­gist. Each goes through a se­ries of phys­i­cal and neu­ro­log­i­cal tests to gauge devel­op­men­tal mile­stones. The team checks to see that ba­bies are bat­ting at toys at about 3 months old, sit­ting on their own by 9 months and say­ing their first words by about their first birth­day.

The pro­gram also helps mothers go through the griev­ing process.

“What we see with most of our moms is that they lost their ex­pected nor­mal baby,” Fa­jardo Hiri­art said. “We try to fo­cus on what their child is do­ing and fo­cus on the pos­i­tive and pro­vide sup­port.”

With Zika, that sup­port will be harder. It is a new dis­ease. No one knows how a child’s de­vel­op­ment will be af­fected in the long term.

Par­ents of a child with autism or Down syn­drome can turn to well-es­tab­lished or­ga­ni­za­tions of­fer­ing re­sources and show­cas­ing suc­cesses, but Zika-af­fected fam­i­lies have no such help. At least not yet.

“For a fam­ily, it’s go­ing to be more iso­lat­ing be­cause ... there’s not a sup­port group,” Berkovits said.

Across the South and South­west, where the mos­quito that is the pri­mary car­rier of Zika is en­demic, ad­vo­cates and of­fi­cials are wor­ried about the abil­ity of pri­vate and state sys­tems to han­dle more chil­dren with spe- cial needs.

Many Early Steps pro­grams in Florida, for in­stance, are near ca­pac­ity and al­ready strug­gle to meet the fed­eral re­quire­ment that all chil­dren be eval­u­ated within 45 days of re­fer­ral for devel­op­men­tal de­lays, Bauer said.

The ex­plod­ing preva­lence of Zika in Puerto Rico could be a fur­ther strain if new mothers there be­gin seek­ing care for their ba­bies on the main­land. Sev­eral dozen preg­nant women are be­ing in­fected daily on the is­land, CDC of­fi­cials said.

But many par­ents might not have al­ter­na­tives. The parts of the South that are most vul­ner­a­ble to the virus are home to some of the na­tion’s poor­est mothers with the least ac­cess to health care.

“In Mi­ami, you may have ac­cess to a full range of spe­cial­ists, but if you’re on the Gulf Coast, in a small town in Alabama, for­get it,” said Cyn­thia Pel­le­grini, a se­nior vice pres­i­dent at the March of Dimes Foun­da­tion.

Fund­ing for sup­port ser­vices of­ten is low, is rarely as­sured and varies tremen­dously by state. Only in­ter­ven­tion by the Texas Supreme Court de­layed $350 mil­lion in Med­i­caid pro­gram cuts from tak­ing ef­fect re­cently. Law­mak­ers there had ap­proved the cuts last year, put­ting phys­i­cal, speech and oc­cu­pa­tional ther­a­pies to dis­abled chil­dren at risk.

In con­fronting a dis­ease that has no treat­ment, ex­perts said it may take years to fully grasp the dam­age Zika does over a child’s life­time.

“We’re at the be­gin­ning of the process of dis­cov­ery. We’re go­ing to find out more and more un­set­tling is­sues about this virus,” said Ir­win Redlener, a Columbia Univer­sity pub­lic health pro­fes­sor and pres­i­dent of the Chil­dren’s Health Fund, which as­sists dis­ad­van­taged chil­dren. “There’s go­ing to be a sig­nif­i­cant uptick in the ba­bies with the ob­vi­ous con­se­quences, like mi­cro­cephaly, and an un­known uptick in ba­bies with more sub­tle prob­lems that have to be as­sessed.”


Pe­di­a­tri­cian Sil­via Fa­jardo Hiri­art checks 9-month-old Tay­lor Moore’s de­vel­op­ment, while her brother Mar­ion watches. Tay­lor does not have Zika.

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