‘We’ve been forgotten’: Brazil’s Zika generation

The government has taken several measures to assist mothers raising Zika-affected children, such as priority access to public housing and minimum-wage payments for the poorest families.

But often they still face difficulties getting access to municipal services because of a lack of information or the complicated bureaucracy.

“They do everything so you don’t come back. There is a lot of bureaucracy so you just give up because you are overwhelmed with so many things,” Ferreira da Silva said.

Initially, she and her husband contacted other families in the same situation to swap information and lobby authorities to make sure their rights were respected, such as the house they have just moved into in Rio.

But their standard of living and the attention they have managed to provide for Miguel is not the rule, they say — and especially not for single mothers who have been abandoned by their partners.

“Miguel makes us fight, not only for him but also for the families. Because we know how difficult it is. We know that many families have an absent father,” said Wallace.

Paradoxically, the biggest difficulty they faced was not receiving complex medical treatments but basic pediatric attention.

“In the public health system, doctors generally don’t know the congenital syndrome (of Zika). So they don’t manage to give basic pediatric care,” Wallace said.

“Yet this same baby who has a congenital syndrome, who has microcephaly and other illnesses too will have, for instance, tooth pain and all those other normal problems other babies have.”

‘Live for today’   

The parents say they would like to have more children. But they are all too aware of the constant attention and resources Miguel requires. So they are putting that off until Thamires completes a nursing course she had to give up and is able to work again.

For now, Miguel is their sole focus. When they can, they take him to children’s parties, and to the beach. For his last birthday, they invited other mothers with infants with microcephaly.

But there are many low moments. In Miguel’s short life so far, he has already been admitted into intensive care eight times.

They find succor in the advice they first received from doctors: never give up.

“Live for today. Miguel could live for 10, 20 years — or two or three. But if you don’t live, you will feel frustrated in the future for all you didn’t experience, they told me,” Thamires said.

“So I will bathe him, kiss him, take in his smell. Because at any moment they could put him in hospital.” 

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