His denialism has left medical professionals without support, floundering to care for patients without the proper resources for either prevention or treatment. Brazil has seen more than 16.7 million cases throughout the pandemic, and the daily death rate currently sits at roughly 2,000. Although that’s down from daily highs of 4,000 in April’s second wave, it’s still one of the highest in the world.
While quality and availability of health care can vary across a country as large as Brazil, even the country’s best medical facilities have been brought to the brink of collapse, and only well-off areas such as São Paulo have seen any rebound.
And six months on from the oxygen crisis in Amazonas, mothers and babies are still feeling the effects.
Care complications
Each year, around 340,000 babies in Brazil are born prematurely—before 37 weeks. That’s double the rate for Europe and, according to the World Health Organization (WHO), the 10th-highest number of preterm births in the world. Many crucial methods of care for these babies, including early breastfeeding and skin-to-skin contact with their parents, remain on hold at hospitals around the country despite evidence that this puts their growth, development, and even survival at much higher risk than covid-19.
While the number of preterm births in Brazil for 2020 has yet to be released, experts such as Denise Suguitani—founder and director of nonprofit Prematuridade, the only national NGO in the country to support premature babies and their families—suspect there will be an increase over previous years.
Prenatal care could prevent many mothers from delivering prematurely, but covid-19 has made expectant parents much more likely to skip those doctor’s visits. According to a study conducted by the Brazilian Federation of Gynecology and Obstetrics Associations in July and August of last year, 81% of obstetrician/gynecologists consulted said their patients were worried about contracting covid-19 during prenatal appointments.
“When the mom has covid and ends up with breathing problems, the baby could go into asphyxia in utero.”
Rossiclei Pinheiro, Federal University of Amazonas
“It’s during prenatal appointments that risks of premature births are identified,” Suguitani says. “So if a pregnant woman skips an appointment or an exam, there’s a possibility that a problem in her pregnancy that could lead to a preterm birth will go undetected.”
Contracting covid-19 during pregnancy can also be a factor in preterm births. According to Rossiclei Pinheiro, a pediatrician and neonatologist at the Federal University of Amazonas, early labor can start when the inflammatory reaction brought on by the coronavirus—or any other type of infection—manifests itself in the amniotic membrane, causing it to rupture prematurely.
In other cases, babies whose mothers have covid-19 have had to be delivered early on purpose.
“When the mom has covid and ends up with breathing problems, the baby could go into asphyxia in utero,” Pinheiro says.
The dangers of limiting contact
During the pandemic, hospitals have limited NICU visitors, and some staff have even stopped parents from touching their babies. Pinheiro and other experts say this is the wrong approach.
A particularly important form of skin-to-skin contact involves newborns resting chest-to-chest on top of a parent. It’s called kangaroo care, and it has been shown to reduce infant deaths by 40%, hypothermia by more than 70%, and severe infections by 65%. In a March study, WHO and partner researchers found that kangaroo care made babies born to covid-infected mothers far more likely to survive, and the benefits far outweighed the small risk of dying from the virus.
Carla Luana da Silva, a 27-year-old woman from the state of São Paulo, was not just prevented from practicing kangaroo care with her extremely premature baby—she was blocked from having any contact with her whatsoever. Da Silva says it was one of the hardest parts of the baby’s 81-day stay in the NICU.
Leggett told researchers that she “became one” with her device. It helped her to control the unpredictable, violent seizures she routinely experienced, and allowed her to take charge of her own life. So she was devastated when, two years later, she was told she had to remove the implant because the company that made it had gone bust.
The removal of this implant, and others like it, might represent a breach of human rights, ethicists say in a paper published earlier this month. And the issue will only become more pressing as the brain implant market grows in the coming years and more people receive devices like Leggett’s. Read the full story.
—Jessica Hamzelou
You can read more about what happens to patients when their life-changing brain implants are removed against their wishes in the latest issue of The Checkup, Jessica’s weekly newsletter giving you the inside track on all things biotech. Sign up to receive it in your inbox every Thursday.
If you’d like to read more about brain implants, why not check out:
+ Brain waves can tell us how much pain someone is in. The research could open doors for personalized brain therapies to target and treat the worst kinds of chronic pain. Read the full story.
+ An ALS patient set a record for communicating via a brain implant. Brain interfaces could let paralyzed people speak at almost normal speeds. Read the full story.
+ Here’s how personalized brain stimulation could treat depression. Implants that track and optimize our brain activity are on the way. Read the full story.
Burkhart’s device was implanted in his brain around nine years ago, a few years after he was left unable to move his limbs following a diving accident. He volunteered to trial the device, which enabled him to move his hand and fingers. But it had to be removed seven and a half years later.
His particular implant was a small set of 100 electrodes, carefully inserted into a part of the brain that helps control movement. It worked by recording brain activity and sending these recordings to a computer, where they were processed using an algorithm. This was connected to a sleeve of electrodes worn on the arm. The idea was to translate thoughts of movement into electrical signals that would trigger movement.
Burkhart was the first to receive the implant, in 2014; he was 24 years old. Once he had recovered from the surgery, he began a training program to learn how to use it. Three times a week for around a year and a half, he visited a lab where the implant could be connected to a computer via a cable leading out of his head.
“It worked really well,” says Burkhart. “We started off just being able to open and close my hand, but after some time we were able to do individual finger movements.” He was eventually able to combine movements and control his grip strength. He was even able to play Guitar Hero.
“There was a lot that I was able to do, which was exciting,” he says. “But it was also still limited.” Not only was he only able to use the device in the lab, but he could only perform lab-based tasks. “Any of the activities we would do would be simplified,” he says.
For example, he could pour a bottle out, but it was only a bottle of beads, because the researchers didn’t want liquids around the electrical equipment. “It was kind of a bummer it wasn’t changing everything in my life, because I had seen how beneficial it could be,” he says.
At any rate, the device worked so well that the team extended the trial. Burkhart was initially meant to have the implant in place for 12 to 18 months, he says. “But everything was really successful … so we were able to continue on for quite a while after that.” The trial was extended on an annual basis, and Burkhart continued to visit the lab twice a week.
“A patient should not have to undergo forcible explantation of a device,” says Nita Farahany, a legal scholar and ethicist at Duke University in North Carolina, who has written a book about neuro rights.
“If there is evidence that a brain-computer interface could become part of the self of the human being, then it seems that under no condition besides medical necessity should it be allowed for that BCI to be explanted without the consent of the human user,” says Ienca. “If that is constitutive of the person, then you’re basically removing something constitutive of the person against their will.” Ienca likens it to the forced removal of organs, which is forbidden in international law.
Mark Cook, a neurologist who worked on the trial Leggett volunteered for, has sympathy with the company, which he says was “ahead of its time.” “I get a lot of correspondence about this; a lot of people inquiring about how wicked it was,” he says. But Cook feels that outcomes like this are always a possibility in medical trials of drugs and devices. He stresses that it’s important for participants to be fully aware of these possibilities before they take part in such trials.
Ienca and Gilbert, however, think something needs to change. Companies should have insurance that covers the maintenance of devices should volunteers need to keep them beyond the end of a clinical trial, for example. Or perhaps states could intervene and provide the necessary funding.
Burkhart has his own suggestions. “These companies need to have the responsibility of supporting these devices in one way or another,” he says. At minimum, companies should set aside funds that cover ongoing maintenance of the devices and their removal only when the user is ready, he says.
Burkhart also thinks the industry could do with a set of standards that allow components to be used in multiple devices. Take batteries, for example. It would be easier to replace a battery in one device if the same batteries were used by every company in the field, he points out. Farahany agrees. “A potential solution … is making devices interoperable so that it can be serviced by others over time,” she says.
“These kinds of challenges that we’re now observing for the first time will become more and more common in future,” says Ienca. Several big companies, including Blackrock Neurotech and Precision Neuroscience, are making significant investments in brain implant technologies. And a search for “brain-computer interface” on an online clinical trials registry gives more than 150 results. Burkhart believes around 30 to 35 people have received brain-computer interfaces similar to his.
Leggett has expressed an interest in future trials of brain implants, but her recent stroke will probably render her ineligible for other studies, says Gilbert. Since the trial ended, she has been trying various combinations of medicines to help manage her seizures. She still misses her implant.
“To finally switch off my device was the beginning of a mourning period for me,” she told Gilbert. “A loss—a feeling like I’d lost something precious and dear to me that could never be replaced. It was a part of me.”
