Mariana Oliveira

There's a scene that keeps coming back to me since I heard Professor Madalena Patrício, of the University of Lisbon's Faculty of Medicine, speak about artificial intelligence in health professions education. It isn't a scene from her talk, exactly — it's from Pluribus, a series I watched recently that, somehow, found a new way to be read in light of what she said. In the show, a signal from space carries the code of a virus that fuses almost all of humanity into a single consciousness. At first glance, what's frightening is the loss of individuality. But something more unsettling may be happening underneath. The infected don't become less intelligent — quite the opposite. They gain instant access to everything any of them has ever known, thought, or concluded. The answer stops being the end of a search. It starts existing before the question even has time to form. That's what makes the world of the show so strange. There's no longer any need to sit with uncertainty, hold a doubt, test a hypothesis, or change one's mind. Knowledge is simply always available, with no gap in which something has to be worked out by a person. Humanity doesn't lose the capacity to know — it slowly loses the need to think. Carol, the protagonist and one of the few people left immune, notices what everyone else doesn't. What looks like harmony to almost everyone feels to her like a slow death of reasoning: not because people have stopped knowing things, but because they no longer need to discover them. Even as everyone else seems to move in perfect sync, in a flawless community, watching it unfold is deeply unsettling. It's hard not to recognize, on a much smaller scale and without any alien virus, a version of this already showing up in my Uni. A student who opens a language model before even forming their own question isn't necessarily doing anything wrong. But they may be making a quiet trade — handing the machine exactly the part of the process that was supposed to help them build their own thinking. The tool offers speed, content, availability. The risk shows up when that ease starts replacing the work of figuring things out. Maybe the real question isn't whether a student uses AI. It's this: what still happens inside them before they accept an answer? Or, more to the point — what has stopped happening? That shift also moves the teacher's place. For a long time, teaching meant, in large part, transmitting what one already knew. The teacher was where knowledge accumulated; the student was the one meant to receive it. That model already had its own limits, but artificial intelligence introduces a break that's hard to ignore. On the surface, if information is just one prompt away, then simply transmitting that knowledge starts to make the teacher's presence in the room feel unnecessary. To follow that logic without question is to fall into a trap now being dressed up as a reason to embrace AI as a legitimate teaching tool. What gets left out of that reasoning is the very thing that justifies a teacher's existence in the first place: the job of teaching a student to think critically and independently. Madalena Patrício called this epistemological leadership. The phrase feels exact, because it moves the teacher away from simply knowing and toward helping someone else decide how to know — how to doubt, how to recognize the edges of what only seems like knowledge. In Pluribus, that kind of formation becomes pointless, because disagreement disappears entirely. And maybe that's exactly where the story offers its most powerful metaphor. Thinking requires some degree of friction. Evidence can contradict a conviction; a question can unsettle an answer; an experience can force someone to rebuild an entire structure of thought. Jack Mezirow placed that movement at the center of transformative learning: it's the dilemma that doesn't fit how we already understand the world that forces us to rethink it. Discomfort, in that sense, isn't a flaw in learning — it's part of it. If knowledge is a path where what you gather along the way matters as much as where you end up, then skipping that path in the name of efficiency may cost someone not just a particular learning experience, but thinking itself as an essential tool of what makes us human. This is why Carol becomes something far more interesting than the standard rebel. She doesn't reject connection simply because anything new feels threatening — she insists on understanding before accepting. She holds onto her own opinion when the rest of the world no longer sees the point of having one; she keeps questioning when everyone else has forgotten what the verb to ask even means. Carol's resistance isn't a rejection of intelligence. It's a refusal to give up her own consciousness — a way of keeping her humanity intact, even as almost everyone else has already lost theirs. There's something of that same posture in what Patrício proposes to institutions. Rather than turning AI into a matter of allegiance — for it or against it, adopt or resist — she talks instead about readiness. And readiness isn't a statement you make once; it's a practice you build. It means giving clear institutional direction, backing teachers and students, and holding onto ethical principles even when the pressure for productivity points toward shortcuts. An institution can fold AI into every one of its processes and still not be ready for it. Adoption happens fast. Educating a student doesn't. In health education, in particular, there are limits worth treating as non-negotiable. AI can suggest, but it can't answer for a clinical decision. It can organize and summarize evidence, but it can't take responsibility for acting on it. It can help simulate a case, but it can't reproduce an encounter with an actual sick person — their vulnerability, their contradictions, their silences, their history. The machine can take part in a judgment. It can't be the one who carries it. That's not just about AI's technical limits, which will keep shifting and improving — it's something more fundamental. In health training, there are decisions someone has to be accountable for. Teaching that is a different job from teaching someone to use a tool. Our job as teachers is to help students tell the difference between a conviction built from knowledge that's been critically examined, and an answer that arrived ready-made — produced by a mathematical language system that's very good at linking words, patterns, and probabilities, but that can never take on our responsibility for what we do with what it gives us. That's why the kind of training in Unis has to happen on two fronts. Teachers need to learn to use AI with real discernment — which has very little to do with mastering prompting techniques, and a lot to do with building the habit of interrogating an answer before passing it along. Students, meanwhile, need to learn to be suspicious of answers that sound too good: to spot the error, notice the gap, recognize the bias, and register when a text's confidence outruns the evidence behind it. Today, that skill starts to look like a basic form of literacy — not just finding a source, but knowing how to judge what a machine hands you as an answer. Rules can set limits. They can block some kinds of misuse. But they can't teach anyone to think. Only practice does that: testing the AI's answer against what you already know, hunting for what's missing, checking what seems right, sitting with the doubt a little longer. Learning to disagree with the machine may turn out to be one of the most important ways of learning from it. Without that habit, the gap between institutions will only widen. On one side, schools that teach students to think with AI, keeping it firmly in its place as a tool. On the other, schools that simply let it fill whatever space it finds. The inequality won't just be about access to technology — it will be about the quality of thinking each institution manages to cultivate around it. In Pluribus, the fusion erases that gap entirely. There's no longer one mind standing next to another. There's one mind, inside everyone. Maybe that's exactly the line a university needs to hold. Some competencies belong to both knowledge and practice: understanding where AI gets things right and where it doesn't, recognizing its biases, reasoning ethically about how it's used — but also communicating with a patient, deciding alongside them, working with other professionals, and holding space for everything that happens in care that no block of text could ever capture. Technology is going to keep advancing. The question was never how to stop it. The question is figuring out what shouldn't be allowed to advance into the space that belongs to the human being in the room. There's a part of health work that schools have always trained less, precisely because it resists being turned into something you can test: listening to someone, holding their vulnerability, noticing what went unsaid, building a decision together, staying present in the face of suffering. These skills are harder to measure. They are the most important ones. AI can change health and education in deep ways. But what that change ends up meaning still depends entirely on who's using it. Empathy, warmth, compassionate listening aren't humanist decorations bolted onto the technique once the "real work" is done — they are part of the care itself. And they're also exactly what technology, by definition, can't do for us. By the end of the talk, I was left with one simple idea the speaker had planted: a lecture only really matters if it changes something after it's over. What Patrício seemed to be asking of universities wasn't just that they teach knowledge about AI, but that they help form the judgment to deal with it — not just that they hand students a tool, but that they teach them to answer for how that tool gets used. That's when my mind drifted back to Carol. She never got to choose a world without that intelligence in it. She had to learn to live beside something that knew more than she did, without letting what it knew decide what she herself should think. That might be the most precise challenge for anyone teaching today: not to raise people immune to artificial intelligence — that would be impossible, and maybe not even desirable — nor to raise people willing to hand it the work of thinking. Maybe our role now is to shape people who can stand beside it, as questioners. People capable of asking before accepting, doubting when it matters, recognizing when an answer isn't enough. Capable, above all, of keeping some distance between what the machine knows and what we choose to do with what it knows. That distance isn't a flaw in the technology. It's the space where our responsibility lives. We need to start forming more Carols. Disclosure: I am not against AI, in fact, I used it to translate this text from the original one. You can read it below: A resposta que chega antes da pergunta Há uma cena que continua voltando à minha cabeça desde que ouvi a professora Madalena Patrício, da Faculdade de Medicina da Universidade de Lisboa, falar sobre inteligência artificial na formação de profissionais de saúde. Não é exatamente uma cena da palestra. É de Pluribus, série que assisti recentemente e que, de algum modo, encontrou ali uma nova chave de leitura. Na série, um sinal vindo do espaço carrega o código de um vírus capaz de fundir quase toda a humanidade em uma única consciência. À primeira vista, o que assusta é a perda da individualidade. Mas talvez haja algo mais inquietante acontecendo. Os infectados não ficam menos inteligentes. Ao contrário: passam a ter acesso imediato a tudo o que qualquer um deles já soube, pensou ou concluiu. A resposta deixa de ser o fim de uma busca. Ela passa a existir antes mesmo de a pergunta amadurecer. É isso que torna aquele mundo tão estranho. Não há mais necessidade de atravessar a incerteza, sustentar uma dúvida, testar uma hipótese, mudar de ideia. O conhecimento está sempre disponível, sem o intervalo em que alguma coisa precisa ser elaborada por uma pessoa. A humanidade não perde a capacidade de saber; perde, aos poucos, a necessidade de pensar. A protagonista Carol, uma das poucas pessoas imunes, percebe o que os demais não percebem. O que parece harmonia para quase todos lhe parece uma espécie de morte lenta do raciocínio. Não porque as pessoas tenham deixado de saber, mas porque já não precisam descobrir. Mesmo que agora todos pareçam estar agindo em sintonia, numa comunidade perfeita, o efeito da nova realidade causa muito desconforto em quem assiste. É difícil não reconhecer, em escala muito menor e sem qualquer vírus extraterrestre, uma possibilidade que começa a aparecer na sala de aula. O estudante que abre um modelo de linguagem antes de formular a própria pergunta talvez não esteja fazendo nada de errado. Mas pode estar fazendo uma troca silenciosa: entrega à máquina justamente a parte do processo que deveria ajudá-lo a formar seu próprio pensamento. A ferramenta oferece velocidade, amplitude, disponibilidade. O risco aparece quando essa facilidade começa a substituir a elaboração. Talvez a questão, portanto, não seja saber se um estudante usa IA. A questão é outra: o que ainda acontece dentro dele antes de aceitar a resposta? Ou, ainda mais importante, o que está deixando de acontecer? Essa mudança desloca também o lugar do professor. Durante muito tempo, ensinar significou, em grande medida, transmitir aquilo que se sabia. O professor era o repositório onde o conhecimento estava reunido; o estudante, aquele que deveria recebê-lo. Esse modelo já carregava suas próprias limitações, mas a inteligência artificial introduz uma ruptura difícil de ignorar. Em um primeiro momento, se a informação está a apenas um prompt de distância, então a simples transmissão desse conhecimento torna a presença do professor na sala de aula desnecessária. Seguir por este caminho é aceitar sem questionar a armadilha que vem no sendo apresentada como razão para endossar a IA como ferramenta legítima de ensino. Fica de fora desse raciocínio o mais importante e que justifica em essência a própria existência da figura do professor: a necessidade de ensinar o aluno a pensar de forma critica e autônoma. Madalena Patrício chamou isso de liderança epistemológica. A expressão parece precisa porque desloca o professor da posição de quem simplesmente sabe para a de quem ajuda outra pessoa a decidir como saber, como duvidar e como reconhecer os limites daquilo que parece saber. Em Pluribus, essa formação se torna desnecessária porque a discordância desaparece. E talvez seja justamente aí que a história ofereça sua metáfora mais poderosa. Pensar exige algum grau de atrito. Uma evidência pode contrariar uma convicção; uma pergunta pode desorganizar uma resposta; uma experiência pode obrigar alguém a rever uma estrutura inteira de pensamento. Jack Mezirow colocou esse movimento no centro da aprendizagem transformadora: é o dilema que não cabe no modo como já compreendemos o mundo que nos obriga a reconstruí-lo. O desconforto, nesse caso, não é um defeito do aprendizado. É parte dele. Se o conhecimento é uma caminhada onde o que se colhe pelo caminho é tão ou mais importante do que o destino final, eliminar essa trajetória em nome da eficiência, pode significar também privar alguém não apenas de uma determinada experiência de aprendizado, mas também do próprio “pensar” como ferramenta essencial na constituição da nossa humanidade. É por esta razao que a Carol transcende a simples figura da rebelde para se tornar algo imensamente mais interessante. Ela não rejeita a conexão porque tudo o que é novo lhe parece ameaçador. Ela exige compreender antes de aceitar. Manter uma opinião própria quando o restante do mundo já não vê motivo para ter uma; continuar questionando quando todos os demais se esqueceram do significado do verbo perguntar. A rebeldia da Carol não representa uma negação à inteligência, ela expressa o desejo de não renunciar à própria consciência e assim permanecer com a sua humanidade intacta (mesmo que na série a maior parte das pessoas já tenha perdido). Há algo dessa atitude naquilo que Patrício propõe às instituições de ensino. Em vez de transformar a IA em uma questão de adesão — ser a favor ou contra, adotar ou resistir —, ela fala em prontidão. E prontidão não é simplesmente fazer uma declaração. É uma prática construída. Significa oferecer uma direção institucional clara, apoiando professores e estudantes e sustentando princípios éticos mesmo que a ânsia por produtividade sugira seguir por atalhos. Uma instituição pode incorporar inteligência artificial a todos os seus processos e, ainda assim, não estar preparada para ela. A adoção acontece depressa. A formação do aluno, leva tempo. Quando falamos em educação em saúde, existem limites que devemos considerar inegociáveis. A IA pode sugerir, mas não pode responder por uma decisão clínica. Pode organizar e resumir evidências, mas não assumir a responsabilidade de quem decide agir a partir delas. Pode ajudar a simular um caso, mas não reproduzir o encontro com uma pessoa doente — com sua vulnerabilidade, suas ambiguidades, seu silêncio, sua história. A máquina pode participar do julgamento. Não pode sustentar o julgamento. Isso não depende apenas das limitações técnicas da IA, que certamente continuarão mudando e evoluindo. Depende de algo mais fundamental: na formação em saúde, existem decisões pelas quais alguém precisa responder. Ensinar isso é diferente de ensinar a usar uma ferramenta. Nosso papel como docentes é o de ensinar a reconhecer a diferença entre uma convicção construída a partir de conhecimento examinado criticamente e uma resposta que chegou pronta, produzida por um sistema de linguagem matemático, capaz de associar palavras, padrões e probabilidades, mas que não pode assumir por nós a responsabilidade pelo que fazemos com elas. Por isso, a formação precisa acontecer em duas frentes. Os professores precisam aprender a usar IA com discernimento, e isso está muito longe de apenas dominar técnicas de prompting. Trata-se de desenvolver o hábito de interrogar a resposta antes de transmiti-la. Os estudantes, por sua vez, precisam aprender a desconfiar de respostas que parecem boas demais: identificar o erro, perceber a lacuna, reconhecer o viés, notar quando a segurança do texto excede a solidez da evidência. Hoje, essa competência se aproxima de uma forma básica de letramento: saber não apenas encontrar uma fonte, mas avaliar aquilo que uma máquina nos entrega como resposta. Regras podem estabelecer limites. Podem impedir alguns usos indevidos. Mas não ensinam ninguém a pensar. Isso só acontece quando existe prática: confrontar a resposta da IA com aquilo que se sabe, procurar o que falta, testar o que parece certo, sustentar a dúvida por mais alguns minutos. Aprender a discordar da máquina talvez se torne uma das formas mais importantes de aprender com ela. Sem esse exercício, a diferença entre instituições tende a se aprofundar. De um lado, estarão aquelas que ensinam estudantes a pensar com a IA, mantendo-a no lugar de ferramenta. De outro, aquelas que simplesmente permitem que ela ocupe os espaços que encontrar. A desigualdade não estará apenas no acesso à tecnologia, mas na qualidade do pensamento que cada instituição terá conseguido formar em torno dela. Em Pluribus, a fusão elimina essa distância. Não existe mais um pensamento ao lado de outro. Existe um pensamento dentro de todos. Talvez seja essa a fronteira que uma universidade precise preservar. Existem competências que pertencem tanto ao conhecimento quanto à prática: compreender onde a IA acerta e erra, reconhecer seus vieses, raciocinar eticamente sobre seu uso; mas também comunicar-se com o paciente, decidir com ele, trabalhar com outros profissionais e sustentar aquilo que acontece no cuidado e que nenhuma resposta textual consegue conter. A tecnologia continuará avançando. A questão nunca foi impedir esse avanço. A questão é saber o que não pode avançar para dentro do lugar que pertence ao humano. Há uma parte do trabalho em saúde que as escolas historicamente treinam menos justamente porque é difícil de transformar em prova: escutar alguém, acolher sua vulnerabilidade, perceber o que não foi dito, construir uma decisão compartilhada, estar presente diante do sofrimento. São competências menos fáceis de medir, mas são as mais importantes. A IA pode mudar profundamente a prática em educação e saúde. O sentido dessa mudança, porém, continua dependendo de quem a utiliza. Empatia, acolhimento, escuta compassiva não são adornos humanistas acrescentados à técnica depois que o essencial foi resolvido. São parte do próprio cuidado. E são também aquilo que a tecnologia, por definição, não pode fazer por nós. Ao final da palestra, fiquei com uma ideia simples provocada pela palestrante: uma palestra só importa quando modifica alguma coisa depois que termina. O que Patrício parecia pedir às universidades não era apenas que ensinassem conhecimento sobre IA, mas que formassem critérios para lidar com ela; não apenas que oferecessem uma ferramenta, mas que ensinassem a responder pelo modo como essa ferramenta é usada. Foi então que meu pensamento voltou novamente em Carol. Ela não teve a possibilidade de escolher um mundo sem aquela inteligência. Precisou aprender a viver ao lado de algo que sabia mais do que ela sem permitir que esse conhecimento determinasse o que ela própria deveria pensar. Talvez seja esse o desafio mais preciso para quem ensina hoje. Não formar pessoas imunes à inteligência artificial — isso seria impossível e talvez nem desejável. Tampouco formar pessoas dispostas a entregar a ela o trabalho de pensar. Talvez o nosso papel agora seja o de formar pessoas capazes de permanecer ao lado dela, como questionadores. Capazes de perguntar antes de aceitar, de duvidar quando necessário, de reconhecer quando uma resposta não basta. Capazes, sobretudo, de conservar alguma distância entre aquilo que a máquina sabe e aquilo que nós decidimos fazer com o que ela sabe. Essa distância não é uma deficiência da tecnologia. É o espaço da nossa responsabilidade. Precisamos formar mais Carols.

Every August, the world pauses to mark International Breastfeeding Week — a moment to celebrate not just a biological act, but a public health priority with lifelong consequences. Human milk is uniquely suited to protect and nourish infants, and this is nowhere more critical than in the smallest, most vulnerable patients: extremely preterm babies. For these infants, mother's own milk — and, when unavailable, donor human milk — is not a lifestyle choice but a medical intervention, reducing the risk of necrotizing enterocolitis, late-onset sepsis, and supporting long-term neurodevelopment. Initiating, protecting, and sustaining lactation for a mother whose baby may spend months in the NICU takes deliberate, skilled, multidisciplinary support — pumping protocols, kangaroo care, lactation consultation, and simple reassurance during an experience defined by uncertainty. But breastfeeding does not happen in a vacuum. Its success is shaped by social determinants of health: paid maternity leave, workplace lactation spaces, access to skilled lactation support, income, housing stability, and freedom from the pressures of returning to work too soon. A mother's ability to breastfeed is inseparable from the conditions society creates around her. And this is precisely why breastfeeding cannot be framed as a woman's individual responsibility or failure. It is a shared societal task — one that requires partners, families, employers, health systems, and policymakers to build environments where breastfeeding is genuinely possible, not just recommended. Brazil has particular reason to lead this conversation. Decades ago, the pioneering work of Cesar Victora and colleagues helped establish, with rigorous epidemiological evidence, the profound impact of breastfeeding on child survival, cognitive development, and long-term chronic disease risk — research that reshaped global health policy and remains foundational to how we understand infant nutrition today. Brazil also holds the largest human milk bank network in the world (Rede Brasileira de Bancos de Leite Humano — BLH-BR). Crucially, Brazilian milk banks never sell human milk — every donation is voluntary, and every drop is provided to preterm infants during NICU stay free of charge. Beyond supplying donor milk to NICUs, these centers offer something remarkable: free, hands-on support to any breastfeeding woman who walks through their doors — help with latch, engorgement, low supply, or simply the reassurance of having questions answered by someone who knows what she's going through. This support is not restricted to Brazilian citizens or mothers with a baby in the hospital; it is also open to foreign women living in or visiting Brazil, with no cost or bureaucracy involved. It's a model built on solidarity rather than transaction, and it raises a genuine question: how does breastfeeding support work in other countries? Is free, walk-in lactation help as accessible elsewhere, or is Brazil's network something closer to an outlier worth learning from? I'm curious to read about practices in other countries.

Also, if you use phototherapy devices with LED lights, there's no difference in skin temperature...

This week I cared for two pediatric patients, both under two years old, each diagnosed with a severe inborn error of metabolism carrying a limited, though uncertain, prognosis. For both families, I recommended a consultation with the pediatric palliative care team. In each case, the parents visibly recoiled at the word “palliative” — a reaction that underscored how far we still have to go in improving care for children with complex chronic conditions. A brief note on my own background may help clarify where this perspective comes from. I trained as a neonatologist and, over the two decades since completing my residency, practiced exclusively in the neonatal ICU (NICU). Two months ago, I took on an academic position in pediatrics, and since then my time has been split between the NICU and the general pediatric ward. As a neonatologist, there is a reflection rarely put into words, yet one that every neonatologist carries into daily practice: we are, by nature, palliativists. Prematurity is not cured — it is followed, and managed. There is no treatment that reverses the immaturity of a brain, a lung, or an intestine born before their time; what exists is support, time, vigilance, and, above all, the building of a path alongside the family while that newborn’s organs mature — or do not. Every individualized care plan, every conversation about the limits of intervention, every shared decision about what to do in the face of a serious complication is, in its essence, an exercise in palliative care, even if it is rarely called by that name inside the NICU. Recognizing this is not a semantic exercise: it is recognizing that the specialty was born palliative, and that denying this denies part of what it has of greatest value to offer. Offering early palliative care, then, is not offering resignation. It is offering the family everything it needs to give that child a life of quality, of dignity, and a real chance to develop to the fullest extent of their own potential — whether that potential is measured in years of life, in weeks, or in one peaceful afternoon held in someone’s arms. It is controlling pain. It is explaining, without euphemism and without cruelty, what is happening. It is helping parents make decisions they can live with afterward, without the added weight of regret over not having been informed in time. It is allowing a family to live whatever time they have with that child as fully as possible, rather than living it under a protective silence that, paradoxically, tends to protect less than it wounds. And yet, there is a misunderstanding that runs through clinics, hospital wards, and family conversations across Brazil: the idea that palliative care is synonymous with end-of-life care. This misconception, as deeply rooted as it is unspoken, is one of the greatest obstacles keeping children with severe chronic illness — and their families — from receiving, early on, the support they need in order to live, not to die. In Latin American culture, severe chronic pediatric illness and death occupy an almost unspeakable place. People say little, avoid naming things, and shield the child and family from the weight of words, as if silence itself were a form of care. A cultural Catholicism runs across generations, even where the faith actually practiced is a different one, lending suffering a sense of a trial to be endured rather than one to be relieved in advance. Within this worldview, calling in the palliative care team is, for many families and no small number of professionals, an announcement of defeat — as if the word and the prognosis were the same thing, as if naming palliative care hastened the outcome that is feared. This confusion carries a real cost. Palliative care and end-of-life care are not synonyms, nor are they mutually exclusive. End-of-life care is one possible stage, not the whole of palliative care. Palliative care is, above all, a philosophy of care that follows the trajectory of an illness from the moment of diagnosis, working alongside curative or disease-modifying treatment where that exists, and standing alone when it is no longer possible. Introducing it early does not mean giving up: it means adding a layer of support — symptom control, honest communication, psychosocial support, shared care planning — across the child’s entire trajectory, whether they are in a phase of intensive treatment, prolonged stability, or terminal illness. Postponing that conversation until only end-of-life remains is to deprive the family of the years, months, or weeks in which that support could have made a real difference to quality of life. But this misunderstanding does not live only among families — it also lives, powerfully, within the health care team itself. Physicians, nurses, and other professionals, trained within a culture that treats death as a therapeutic failure, frequently reproduce the same mistaken equation: bringing in the palliative team means admitting that “there is nothing left to be done.” This belief, internalized over the course of clinical training, delays referrals, postpones difficult conversations, and causes palliative care to arrive too late — at a point when it is no longer possible to build a care plan together with the family, only to manage a crisis. Changing this culture, then, begins inside the hospital itself: teams need to be trained to recognize that recommending palliative care early is an act of clinical competence and of care, not a sentence. ICU leaders, residents, and preceptors need to model this integration in everyday practice, normalizing the palliative care specialist’s presence as part of the multidisciplinary team from the very start of a serious illness’s trajectory — not as the team called in last, once the outcome has already been sealed. Changing this culture takes time, and it takes language. It requires that professionals themselves stop reserving the word “palliative” for final moments and instead integrate it, naturally, into the routine care of any serious, chronic, or potentially life-limiting illness — including, and especially, extreme prematurity. It requires medical training that treats pediatric palliative care as a structural part of care, not as a somber appendix to be invoked only when nothing else is left. And it requires, from all of us, the courage to name what we do from the very first day: caring for an entire life, however brief or however long it turns out to be. Disclosure: This text was originally written in Portuguese, and used LLM-AI to aid with translation. You can read the original text (and my original voice) below. O cuidado que não ousa dizer o próprio nome Essa semana eu atendi dois pacientes pediátricos, ambos com menos de dois anos de idade em que diagnosticamos erros inatos do metabolismo graves e com prognósticos reservados, ainda que de duração incerta. Para as duas famílias, eu ofereci a consultoria e o apoio da equipe de cuidados paliativos pediátricos. As duas famílias praticamente se encolheram ao escutar a palavra paliativo e isso me fez pensar que temos um longo caminho pela frente para qualificar o cuidado da criança com condições complexas crônicas. Vou explicar um pouco do meu contexto, para deixar claro qual a minha percepção de cuidados paliativos. Sou neonatologista de formação, desde a residência, que completei há 20 anos, trabalhei exclusivamente na UTI Neonatal. Há dois meses, iniciei uma posição acadêmica em pediatria e, desde então, tenho dividido meu tempo entre incubadoras e a internação pediátrica. Como neonatologista, há uma reflexão que raramente se verbaliza, mas que todo neonatologista carrega na prática cotidiana: somos, por natureza, paliativistas. A prematuridade não se cura — ela se acompanha, se maneja. Não existe um tratamento que reverta a imaturidade de um cérebro, de um pulmão, de um intestino nascidos antes da hora; existe suporte, tempo, vigilância e, sobretudo, a construção de um caminho junto à família enquanto o organismo daquele recém-nascido amadurece — ou não. Cada plano de cuidado individualizado, cada conversa sobre limites de intervenção, cada decisão compartilhada sobre o que fazer diante de uma intercorrência grave é, na sua essência, um exercício de cuidado paliativo, ainda que raramente chamado por esse nome dentro da UTI neonatal. Reconhecer isso não é um exercício semântico: é reconhecer que a especialidade já nasceu paliativista e que negar isso é negar parte do que ela tem de mais valioso a oferecer. Oferecer cuidado paliativo precoce, então, não é oferecer resignação. É oferecer à família tudo o que ela precisa para dar àquela criança uma vida com qualidade, com dignidade e com a chance real de se desenvolver até o limite do seu próprio potencial — seja esse potencial medido em anos de vida, seja em semanas, seja em uma tarde tranquila no colo. É controlar a dor. É explicar, sem eufemismos nem crueldade, o que está acontecendo. É ajudar os pais a tomar decisões que possam sustentar depois, sem o peso adicional do arrependimento por não terem sido informados a tempo. É permitir que uma família viva o tempo que tiver com aquela criança da forma mais plena possível, em vez de vivê-lo sob o silêncio protetor que, paradoxalmente, costuma proteger menos do que fere. Entretanto, há um mal-entendido que atravessa consultórios, enfermarias e rodas de família brasileiras: a ideia de que cuidado paliativo é sinônimo de fim de vida. Esse equívoco, tão arraigado quanto silencioso, é um dos maiores obstáculos para que crianças com doenças crônicas graves e suas famílias recebam, desde cedo, o suporte que precisam para viver — não para morrer. Na cultura latino-americana, a doença pediátrica crônica grave e a morte ocupam um lugar quase indizível. Fala-se pouco, evita-se nomear, protege-se a criança e a família do peso das palavras como se o silêncio fosse, ele próprio, uma forma de cuidado. Há um catolicismo cultural que atravessa gerações, ainda que a fé praticada seja outra, e que empresta ao sofrimento um sentido de provação a ser suportada, não necessariamente aliviada com antecedência. Nesse imaginário, chamar a equipe de cuidados paliativos é, para muitas famílias e não poucos profissionais, um anúncio de derrota — como se palavra e prognóstico fossem a mesma coisa, como se nomear o cuidado paliativo apressasse o desfecho que se teme. Essa confusão tem um custo concreto. Cuidado paliativo e cuidado de fim de vida não são sinônimos, tampouco são excludentes. O cuidado de fim de vida é uma etapa possível, não a totalidade do paliativismo. Cuidado paliativo é, antes de tudo, uma filosofia de cuidado que acompanha a trajetória da doença desde o diagnóstico, atuando em paralelo ao tratamento curativo ou modificador quando ele existe, e sozinho quando ele não é mais possível. Introduzi-lo precocemente não significa desistir: significa somar uma camada de suporte — controle de sintomas, comunicação honesta, suporte psicossocial, planejamento compartilhado de cuidados — à trajetória inteira da criança, esteja ela em fase de tratamento intensivo, de estabilidade prolongada ou de terminalidade. Adiar essa conversa para o momento em que só resta o fim de vida é privar a família de anos, meses ou semanas em que esse suporte poderia ter feito diferença real na qualidade de vida. Mas esse mal-entendido não mora apenas nas famílias — ele também habita, com força, dentro da própria equipe de saúde. Médicos, enfermeiros e demais profissionais, formados em uma cultura que trata a morte como fracasso terapêutico, frequentemente reproduzem a mesma equação equivocada: acionar a equipe de paliativos é admitir que "não há mais nada a fazer". Essa crença, internalizada ao longo da formação técnica, atrasa encaminhamentos, adia conversas difíceis e faz com que o cuidado paliativo chegue tarde demais — quando já não é mais possível construir junto à família um plano de cuidado, apenas administrar uma crise. Mudar essa cultura, portanto, começa dentro do próprio hospital: é preciso capacitar equipes para reconhecer que indicar paliativismo precocemente é um ato de competência clínica e de cuidado, não uma sentença. É preciso que líderes de UTI, residentes e preceptores modelem essa integração no dia a dia, normalizando a presença do paliativista como parte da equipe multiprofissional desde o início da trajetória de uma doença grave, e não como o time chamado por último, quando o desfecho já está selado. Mudar essa cultura exige tempo e exige linguagem. Exige que os próprios profissionais deixem de reservar o termo "paliativo" para os momentos finais e passem a integrá-lo, com naturalidade, à rotina de qualquer doença grave, crônica ou potencialmente limitante — inclusive, e sobretudo, à prematuridade extrema. Exige formação médica que trate paliativismo pediátrico como parte estrutural do cuidado, não como um apêndice sombrio a ser acionado somente quando não resta mais nada a fazer. E exige, de todos nós, coragem para nomear o que fazemos desde o primeiro dia: cuidar de uma vida inteira, por mais breve ou por mais longa que ela venha a ser.

I agree with you, @Stefan Johansson. Consciousness formation has long fascinated me — Blade Runner is my favorite film, and Westworld (first two seasons) is one of the best series I've watched; both are great entry points for this discussion. That said, I think the most pressing practical question is how we create environments that best support our patients' neurodevelopmental trajectory. We are, after all, caring for conscious beings in the making.

One of the best parts of working in the NICU is the visits we receive from families who have graduated and come back with their growing, glowing babies. During these visits, I was always puzzled by the fact that some of them — especially the ones I worked more closely with — seemed to recognize my voice and would even award me with a smile. I do have the habit of chatting with my patients, and since I used to work every weekday in the mornings, those babies heard my voice a lot. But still: would it really be possible that they remembered it? This week I came across a study that made me think about this more seriously: https://www.science.org/doi/10.1126/science.adt7570 Published in Science in March 2025, Yates and colleagues scanned the brains of awake infants between 4 and 25 months of age while showing them photographs they had never seen before. Using functional MRI, they found that babies whose hippocampus — the brain region responsible for forming memories — was more active during that first exposure were more likely to recognize the image later. This pattern emerged reliably around 12 months of age. The surprising conclusion: infants do form individual memories. The reason we cannot recall our earliest years is not that memories were never made — it is that, as the brain matures, the mechanism for retrieving them stops working. Infantile amnesia, in this new framing, is a retrieval problem, not an encoding problem. The memories were there. We just lose access to them. This reframes something fundamental. The infant brain is not a passive, unrecording system. It is actively taking things in — and the hippocampus is already doing its job much earlier than we used to think. And what about preterm babies (and their preterm brains)? Here is where it gets both more complex and more relevant to neonatology. Research in animal models shows that the basic cellular machinery for forming memories — including the synaptic plasticity mechanisms that underlie learning — is already functional in the hippocampus at the equivalent of the extreme preterm period in humans. The hardware is there, remarkably early. But it is also remarkably fragile. Even brief episodes of low oxygen, which are common in very preterm infants, can disrupt hippocampal maturation without causing the kind of visible brain injury we look for on imaging. The damage is functional and silent: changes in how neurons connect, how they communicate, and how efficiently they encode new information. Studies consistently show that very preterm infants have smaller hippocampal volumes by the time they reach term-equivalent age, and that these differences are associated with memory and learning difficulties that persist into school age. So the preterm infant carries a double challenge: the universal retrieval barrier that affects all of us (infantile amnesia), plus a more specific vulnerability in the very encoding mechanisms that Yates showed are necessary for memories to form in the first place. But what about voice recognition? Here is the part that I find most compelling — and that may speak directly to what I have been observing in those follow-up visits. Not all memory depends on the hippocampus. Voice recognition and auditory familiarity are processed through circuits that develop earlier and are more resilient than the ones involved in episodic memory. The auditory cortex and surrounding regions mature substantially during the third trimester — precisely the period that preterm infants spend in the NICU. Recognizing something as familiar, without being able to explicitly recall when or where you encountered it, is a different and older form of memory, mediated by different brain structures. A baby who spent weeks hearing the same voice every morning is not retrieving an episode. They may simply be responding to something that feels, at some neural level, known. Safe. Familiar. That kind of recognition does not require an intact retrieval system. It may not even require conscious processing. I am not suggesting that NICU babies consciously remember us. But the neuroscience does suggest that the voices in the room during those early weeks are part of an environment that a developing brain is actively processing — and that repeated, warm, familiar auditory input during a period of extraordinary neural plasticity is not inconsequential. The baby who smiles when they hear my voice at follow-up may not remember me in any way they could ever describe. But something in their brain might recognize that this particular voice was there — consistently, every morning — during one of the most intense experiences of their early life. That possibility alone feels like a good reason to keep talking to our patients.

Thanks for sharing this case, @Gustaf Lernfelt I have also learned a lot from it. You are right — most (all?) of the time, we rush into decisions on issues that have many complex aspects to consider. I truly believe we can do better, especially when it comes to what we communicate to families. In this case, you managed to honor the mother's wish to breastfeed while keeping her on treatment and ensuring the infant's safety. Well done!

That’s a great question, @piatkat Yes, I would recommend that the mother pumps and dumps at the times following medication intake. She can pump/breastfeed immediately before taking the medication, and then — depending on the medication’s peak plasma concentration timing — discard the next pumping session. Since these are anticonvulsants, one practical strategy could be to time the medication dose before sleep, offer pumped milk or formula during overnight feeds, and resume direct breastfeeding in the morning. It is also important to consider social determinants of health (especially relevant in a global forum like this one). Many families already face significant financial burden from long-term medications. In these cases, being able to maintain breastfeeding represents a meaningful way to reduce formula costs. Personally, I find it helpful to already establish these routines during the NICU admission — this makes it much easier for families to maintain consistency after discharge.

Dear @Gustaf Lernfelt Thank you for sharing this complex and thoughtful case. When evaluating maternal medications and breastfeeding safety, I always start by consulting with a clinical pharmacist to carefully analyze the pharmacokinetics of each drug involved — particularly relative infant dose (RID), protein binding, molecular weight, oral bioavailability, and half-life. For your specific polypharmacy situation: Carbamazepine is generally considered compatible with breastfeeding, though monitoring for sedation and feeding difficulties is recommended. Brivaracetam has limited lactation data, but its pharmacokinetic profile suggests meaningful transfer into milk — this is the drug I would be most cautious about. Mirtazapine data are relatively reassuring, though again, infant sedation monitoring is warranted. Rather than reducing milk volume as the primary strategy, our approach is to time feeds strategically — avoiding breastfeeding at peak maternal plasma concentrations (typically 1–3 hours post-dose) and encouraging feeds just before the next dose when drug levels are at their trough. Given the mother’s divided dosing schedule, this may actually be quite feasible to implement. Since the infant is already tolerating 12 mL MOM per feed without apparent adverse effects, this is reassuring data you already have in hand. A gradual stepwise increase in MOM proportion, with close monitoring for sedation, poor feeding, or neurological signs, seems reasonable rather than an abrupt switch to formula. I would also strongly encourage involving the mother’s neurologist to explore whether brivaracetam could be substituted or the dose adjusted — though I recognize that complex epilepsy management cannot always be easily modified. I look forward to hearing @Dotan S perspective on the polypharmacy framework, as these cases are indeed among the most challenging we face.

That would be awesome! It would be an honor to host a 99nicu conf!

Dear Stefan, Reading your reflection on the 20-year journey of 99nicu is truly inspiring. Thank you for creating not only a platform, but a global home for neonatal professionals united by the same purpose: improving care for newborns and their families. As someone who joined this community years after its creation, I am deeply grateful for the warm welcome, the openness to share knowledge, the respect, and the sense of belonging that 99nicu offers. It is remarkable to think that you envisioned and built this kind of collaborative digital space two decades ago — long before online professional communities and social networking became part of everyday life. Your vision was genuinely ahead of its time. What started as an innovative idea became something much greater: a space where science, generosity, mentorship, and human connection coexist. In a field as demanding as neonatology, having a community like this makes a real difference. Thank you for your leadership, your persistence, and your belief that knowledge grows stronger when shared freely. It is an honor to be part of this community and to walk alongside colleagues from all over the world who share the same commitment to neonatal care. Congratulations on these 20 years of impact, innovation, and connection. And thank you for making all of us feel part of something meaningful. With gratitude, Mariana

@AntoineBachy this is a critical topic, and in my view, current practices in many centers may overemphasize theoretical microbiological risks at the expense of the well-established benefits of mother’s own milk (MOM) for preterm infants. Based on more than 40 years of experience in a tertiary NICU in southern Brazil—and systematic data collection since 2011 within the Vermont Oxford Network—we have adopted a deliberately non-interventionist approach regarding bacteriological screening and CMV management of MOM. Answering to your questions: Patient Selection & Duration: We do not perform routine bacteriological screening of MOM in any subgroup, including extremely preterm or VLBW infants. Screening is reserved exclusively for cases with clinical suspicion of infection, particularly sepsis-like syndromes. In our experience, routine surveillance has not demonstrated sufficient benefit to justify its risks, costs, and unintended consequences. Frequency & Uncertainty: We do not perform periodic microbiological testing. Instead, risk mitigation relies on strict adherence to standardized protocols for milk expression, storage, and handling, as defined by the Brazilian Human Milk Bank Network. We believe this preventive approach is more effective than intermittent culturing, which may create both false reassurance and unnecessary interventions. Bacteriological Thresholds: We do not routinely culture MOM in our NICU. However, when microbiological control is applied—particularly within human milk banks—it follows well-defined technical criteria rather than arbitrary thresholds. According to Brazilian standards, screening targets Gram-negative bacilli, defined as aerobic or facultative anaerobic, non-spore-forming, oxidase-negative microorganisms capable of growing in the presence of bile salts or surfactants, and fermenting lactose with acid, gas, and aldehyde production at 35°C within 24–48 hours, often with β-galactosidase activity. This reflects a targeted safety strategy, focusing on clinically relevant pathogens. Importantly, these criteria are embedded within a structured quality-control system for donor milk and do not support routine bacteriological screening of MOM in NICU settings. The CMV Challenge: We do not perform routine CMV screening in mothers and do not apply Holder pasteurization to MOM based on serostatus. This is consistent with current understanding that postnatally acquired CMV infection differs significantly from congenital disease and is not a contraindication to breastfeeding, as stated by the American Academy of Pediatrics. Our preventive strategy is internally consistent: we ensure CMV-safe blood transfusions (CMV-negative or leukoreduced) for extremely preterm infants (<30 weeks), addressing a well-established route of transmission that is sometimes overlooked when focus is placed primarily on breast milk. Across decades of practice, severe CMV disease associated with MOM has been exceedingly rare in our unit. When it occurred, it presented as a sepsis-like syndrome and responded well to short-course antiviral therapy. Resource Management: We consider preservation of MOM a priority. Milk disposal is minimized and limited to exceptional, clinically justified situations. Protocols that lead to frequent discard or excessive processing risk not only reducing the biological value of milk but also discouraging maternal participation and contributing to pumping fatigue—which, in our view, directly conflicts with the principle of primum non nocere. It is important to highlight that Brazil has the largest human milk bank network in the world, supported by robust, standardized national regulations governing collection, processing, pasteurization, and distribution of human milk. These include: Clearly defined microbiological screening criteria (focused on Gram-negative pathogens) Standardized Holder pasteurization (62.5°C for 30 minutes) for donor milk Mandatory post-pasteurization microbiological quality control Notably, even within this highly regulated system, routine CMV screening is not performed, and pasteurization is primarily reserved for donor milk—not MOM, which is only pasteurized if the production exceeds the maximum freezing time for storage. Our position is that routine bacteriological screening and CMV-driven pasteurization of MOM are not supported by current evidence and may result in more harm than benefit. A strategy centered on preventive practices, standardized handling, and clinical vigilance is, in our experience, safer, more sustainable, and better aligned with the unique biological value of human milk. We recognize that practices vary across settings, but we would strongly encourage reconsideration of protocols that prioritize theoretical risks over demonstrated benefits. I would love to know how other NICUs face these challenges and let me know if I can help with anything else.

Thank you for the paper, @Annika

I’d love to hear from the 99NICU community about your go-to references. A few years ago, our team cared for a remarkable mother whose story reminded us how much nuance—and teamwork—breastfeeding counseling can require. She had undergone a liver transplant as a teenager and remained on lifelong anti-rejection medications. Years later, she delivered a healthy full-term baby and had a strong, heartfelt wish to breastfeed. As you can imagine, her medications raised questions about safety and infant exposure. Instead of defaulting to “no,” our team—neonatologist, clinical pharmacist, and the mother’s own transplant specialist—reviewed each drug carefully. We dove deep into pharmacokinetics and pharmacodynamics, half-lives, peak serum times, and milk-plasma ratios. The goal was to adapt the medication schedule to support breastfeeding, rather than ask her to give up breastfeeding because of the medications. Together, we developed a practical plan: • She could directly breastfeed from 7 AM to 7 PM. • She would take her immunosuppressive dose immediately after 7 PM and avoid breastfeeding until 7 AM the next morning. • She would pump at least twice overnight to maintain supply, but this milk would be discarded. • Her baby would receive formula as needed during the nighttime window. With this tailored approach, she was able to partially breastfeed her baby for eight months, which meant the world to her. For us, it was a powerful reminder that with the right information—and interprofessional collaboration—we can often make breastfeeding possible even in complex medical situations. This case was one that helped me shape my personal practice when it comes to breastfeeding support and orientation. It also highlighted how important it is to have trustworthy, up-to-date resources on medication safety in lactation. So I’m curious: what resources do you rely on to check whether a medication is compatible with breastfeeding? Have you managed similar cases you would like to share, and what tools or references were most helpful (e.g., online databases, institutional guidelines, books, lactation pharmacology experts)? Would love to learn from your experience!