Lifelong care, heartaches ahead for babies born with Zika in U.S.
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.
Evaluating infants
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. Advocacy groups are seeking to raise awareness 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 during pregnancy. They heard ophthalmologist Camila Ventura of Brazil, the epicenter of Zika in the Americas, describe how extremely irritable 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. In addition to the babies already born with Zika-related problems, at least six women have lost or terminated pregnancies because their fetuses suffered brain defects from the virus.
‘This is new territory’
“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 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.”