Macedo keeps track of children from pregnancy until they are 2 years old, ensuring they attain the minimum weight for surgery. She also monitors their overall nutrition. She became a nutritionist to positively impact her patients’ health and is always excited about the results she sees in attending newborns and the influence on the rest of the family. “I am often able to gradually change the eating habits of the whole family to healthier ones,” she said. “That's when parents are most open to change.”

Speaking rapidly, Macedo explains her day-to-day work in technical detail but it's the relationship between her and her patients that seems to be the most important aspect of her job. “We create a very close bond,” she said. Replying to patients outside of her office hours has become a norm. “I feel the need to make myself available because it helps the mother to feel confident.”

Macedo’s work routine had to be adapted when the pandemic led to the shutdown of the Center for Treatment of Craniofacial Anomalies, or CTAC, the specialist public health unit where Macedo and her multidisciplinary team attended to families like Kalebe’s. Before COVID-19, they performed 1,000 monthly consultations and about 150 reparative surgeries per year, according to Tatiana Torres, administrative coordinator of CTAC. Then everything stopped. “The caution with COVID was necessary, but that ended up making it more difficult to deliver the service,” Torres said.

CTAC is a specialist clinic that focuses on craniofacial anomalies, located within Policlínica Piquet Carneiro in Rio de Janeiro. CTAC resumed in-person appointments in mid-August and introduced a number of safety measures, such as limiting the number of patients who can be seen each day.

In Brazil, 1 in 650 babies are born with a cleft lip or palate. The cause is not always clear. Genetic and environmental factors — smoking, maternal illness, infections, a lack of vitamin B, and radiation — are known to play a role. “But the way it works is still difficult to explain,” said Nivaldo Alonso, a plastic surgeon at the University of São Paulo.

Cleft lip is usually picked up during pregnancy. Kalebe’s father, Jésus de Moraes, was born with the condition and was the first to realize his son had it. “When we saw the morphological scan, I saw the cleft,” he said. Moraes received treatment as a child and, despite his voice cracking a little because he dropped out of speech therapy, he faces no major issues today.

Even so, the news came as a shock for the expectant mother. “There was despair, a bit of crying, because you don't know how it will be, don't know if you'll make it,” Duarte said. And giving birth during the pandemic only added to her anxiety. “It was crazy,” the mother said. “We overcame something each day.”

But the videoconferences with the speech therapist, pediatrician, plastic surgeon, and nutritionist gradually calmed the family down. “They were very welcoming,” Duarte said. “It felt like it was in person, from how much they cared and still care.”

11-month-old Henrique Luiz de Jesus Sacramento has been receiving care at CTAC since one month after his birth. His mother Karen and speech therapist Ana Ludmila Paiva explain how multidisciplinary treatment has aided his development.

Despite efforts from the clinical professionals to continue operating remotely, the impact of COVID-19 on cleft treatment is “terrible,” according to Alonso. “We have months of procedures delayed. There will be no rooms available to perform the surgeries. And my concern is that lip and palate have a direct relationship with speech,” he said.

Brazil’s public health system — known as the Unified Health System, or SUS — is funded with tax revenues and offers free care to residents and visitors. However, low public spending on health, compared with other countries that have similar systems, threatens its sustainability, as do economic and political crises. Because of bottlenecks in its coverage, around 25% of Brazilians have private health insurance.

Care for cleft patients is primarily publicly funded, but the relevant facilities are concentrated in the wealthiest areas like Rio de Janeiro and São Paulo. Despite these cities offering quality services, the unequal distribution overwhelms the system and forces families to move home or travel long distances to access treatment. An estimated 4,000 to 5,000 babies are born with the condition per year, and patients tend to need treatment until adulthood. Middle- and higher-income groups usually seek private care.