Lifelong heartache, care ahead for US babies born with Zika

July 25, 2016 6:30 am

’s
littlest victims could suffer from microcephaly as well as other birth
defects that may not be immediately apparent, including vision defects,
hearing problems and seizure disorders. Photo/AP

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 and paediatric 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 the US Centers for Disease Control
and Prevention are holding regular talks with experts and non-profits
organisations about the array of services the infants and their families
will need well into the future.

Advocacy groups are seeking to raise awareness among parents
and daycare providers, and some high-risk US states are streamlining
existing programmes so that they can rapidly connect Zika babies with
physical, occupational and other therapies.
Late last week 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 , the epicentre of Zika
in the Americas, describe how extremely irritable, even inconsolable,
the newborns with microcephaly are.
“The babies cannot stop crying,” she said.

Carla Severina de Silva’s husband left her
after their baby was diagnosed with microcephaly. See video below.
Photo/Whitney Leaming, Matt McClain, Washington Post
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 the US 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 non profit
organisation 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?’

US
Federal and local health officials are monitoring at least 400 pregnant
women with Zika in the nation’s 50 states and the District of Columbia,
up from 346 a week ago, and another 378 pregnant women in the US
territories, most of them in Puerto Rico. In addition to the babies
already born with Zika-related problems – the latest was announced on
Friday by New York City health officials – at least six women have lost
or terminated pregnancies because their foetuses 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 the case
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 foetus.
“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 foetuses 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 characterised by an
abnormally small head and underdeveloped brain, Zika can cause
neurological harm affecting vision, hearing, muscle and bone
development, 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 Paediatrics. “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 paediatric 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 US state to have an early intervention programme
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 programmes, 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 going to be a major problem,” said Charles Bauer, a
professor of Paediatrics and neonatology at the University of Miami
Mailman Center for Child Development. The university runs one of the
state’s 15 Early Steps programmes, and its paediatricians, 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 programme are evaluated by specialists, such as
Silvia Fajardo Hiriart, a paediatrician, 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 programme 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
organisations 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 US South and Southwest, where the mosquito that primarily carries
Zika is endemic, advocates and officials are worried about the ability
of private and state systems to handle more children with special needs.
Many
Early Steps programmes 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 programme 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.

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