Stefan Johansson

Hello! I have little to add to Dotans excellent post above, just how we do this - we rarely use immunoglobulines but sometimes opt for this, when there is a DAT-driven hemolytic hyperbili. We typically give 1g/kg, and start the infusion at 0.3 ml/kg/hour, doubling the infusion rate every half hour up to a max of 4.8 ml/kg/h. So, we end up with a total infusion time of about 3.5 hours. I attach the XLS-sheet we use , I am sure you can translate with an AI-engine or so Privigeninfusionsschema-4.xlsx

Sweden is a good country to be born extremely preterm. Neonatal intensive care is centralized and pretty much equally organized, and outcomes are regarded as good and similar throughout the country. Like in most other European countries, the welfare system enables equal access for all, practically at no cost for families. Sweden has been at the forefront of the slide of the ”window of viability”, i.e. at which gestational age extremely preterm infants are offered intensive care. I don’t know how this came about, but I think we, i.e. Swedes, have an unusually high trust in society and experts, and we seem willing to ”try and see how it goes” as we count on societal support if problems arise later. If you want to see this from the another angle, one could also regard the Sweden as a bit patriarchal, where people follow top-down advice and form their own opinions and decisions to a lesser extent. As of today, our cutoff between miscarriage and live-birth is at 22+0 weeks, and our national guideline from our Neonatal Society states that mothers with threatening delivery at 22 weeks should be transferred to a regional university hospital and active care should be considered. This current strategy is however on the radar for re-evaluation. The Swedish National Council on Medical Ethics, an independent body within the Government offices, recently issued a thorough report about the care of infants born at 22 weeks. The main take homes are that 1) comfort care without a life-saving intent should be the primary strategy, and that 2) parents have a right to be engaged in a true shared decision-making process. The Council suggests that the Swedish National Board of Health should develop a new national guideline taking their conclusions into account. While this medico-ethical report have already been discussed a lot, even in national public media, I foresee this is only the preamble to a more challenging and painful (and potentially dirty!) debate between the opposing sides of this fence. There will be different opinions and arguments not only from professional representatives and parents, but also politicians, philosophers and many other stakeholders will probably express their various positions. Whether that future debate will be in the best interest of infants born at 22 weeks, we’ll see. With this long introduction, I would like to high-light this paper in Journal of Pediatrics, about Quality of Life in Swedish adults born extremely preterm. In short, the paper is based on the so-called ”1000g-study” including a cohort of ELBW infants born in Sweden in 1990-92. While the paper reports more disabilities in adulthood in those born ELBW, the perception of quality of life was no different compared to a term-born control population. And the press release concludes that ”..these findings provide the best available assessment when giving information today to parents of extremely premature children...” If one only reads the press release and abstract, it all sounds good! But can those findings really be generalized to extremely preterm infants born today? I doubt that. First of all, as shown in the study population flow chart, only half of the eligible survivors completed the QoL survey (168 of 345). If one goes to the Tables, the responders seems to be a much healthier subpopulation, at least there are big differences in disability rates between responders and non-responders. For example, - cerebral palsy was twice as common in non-responders (14.1% vs 6.5%) - epilepsy and visual impairment was four times more common (9.4% vs 2.5%, and 4.7% vs 1.0%) - non-responders had two-three times more often intellectual development disorders (17.1% vs 4.5%), attention disorders (18.8% vs 9.5%) and autism (15.9% vs 6.0%) So, even if the QoL surveying of responders had good internal validity, there are good reasons to question the external validity. Would non-responding ELBW adults with much higher rates of neurological diagnoses score their QoL as high as healthier group responders? The truth is that we don’t know. The main question when it comes to generalizing to today’s ELBW context is however something else, related to a more basic fact. Who are the survivors in the Swedish ”1000g-study”? Neonatal intensive care has indeed improved since then. Today, there is generally a high chance to survive extremely preterm birth. In infants born at 24 weeks and onwards, survival is what we expect, right? But what was the survival in ELBW infants in the early 1990s? The original publication of the ”1000g-study” illustrates how much different the situation was in the early 1990s, see the mortality rates per gestational week in the graph. The overall infant mortality rate was 48% in infants born at 23-27 weeks, and the subgroup of 23-24 week infants had a 80% mortality rate. Furtermore, quite many infants were coded as still-born these days, and one can wonder about the degree of potential mis-classifications there. For example, in week 23, there were 47 live-born (of which 43 died during infancy) and 76 infants were classified as still-born. Naturally, the original cohort included no infants born at 22 weeks. So, the way I read the paper about QoL in ELBW adults born in the early 1990s, is mostly that the outlook is fine for those born at 26-27 weeks, especially in those not impacted by significant neurological morbidities later in life. Which is indeed re-assuring, those infants represent the largest group of extremely preterm infants. However, there remains such a large gap of knowledge about the long-term trajectories for our ”nano-preterm” infants in our NICUs. The sloppy saying goes that ”More research is needed”, but in this case we have an obligation to aggregate structured long term data about health and disease in those surviving the ”window of viability”. Without knowledge, we will keep struggling how our actual clinical work can align with the best interest of our most vulnerable patients and their families.

Hi! Did you check out the Tiny Baby Collaborative’s webinars? here’s the three that relates to fluids/nutrition/gastro:

Thanks so much @Mariana Oliveira for those kind words, and thanks for being part of our team! And lets hope we can bring our conf to Brazil

I am posting this on behalf Prof Fumihiko Namba, my Japanese colleague, they are doing an international survey about management of periviable infants. Click here to take the survey.

You are a star Vicky! Next meetup we run a Wembley Stadium

Hello! I do not work in a NICU with surgical patients now but will check the Stockholm practise. Re-feeding the proximal stoma content is the general principle but I think it depends on the level of the stoma (as you suggest). Lets hope more share their feedback! @Francesco Cardona what is your thoughts with your PICU perspective?

Thank you @Francesco Cardona for being a great friend and brother on this somewhat bumpy journey. We have sorted out many things throughout the years, especially the very first Future of Neonatology conference in Stockholm, when we did "everything" what most conference organisers had others to do. And if I remember correctly, your son was about to be born, and my father the other way around... so there were indeed many things up in the air! Lets hope we can meet up soon!

Thanks @piatkat for kind words, and I am glad our paths crossed!

What a great initiative, and such important things to sort out!

On May 11, 2026, 99nicu turns 20. It’s a moment that feels deeply meaningful to me. When I shared the very first words on 99nicu back in 2006, and celibrated our first birth day in 2007, the idea was simple: to create a web-based space where NICU staff could “share and care.” This was before social media as we know it today, when like-minded people gathered on bulletin boards in the era of what we then called Web 2.0 (Wikipedia), guided by the belief that “information wants to be free.” (Those really were the days!) And yes, our first logo was… not too bad 🙂 Much of my inspiration back then came from 99mac, a community I was part of, where Mac users helped each other with all kinds of IT-related challenges. It made me think: why shouldn’t NICU staff have something similar? As a young neonatal specialist at the time, I was eager to connect beyond my own unit. But with demanding shifts, traveling to conferences was rarely possible. Since 2006, 99nicu has gone through many phases, from the early “just do it” years, through quieter periods, to where we are today: a full-fledged community with this website, conferences, webinars, and even the NICUVERSE, our own social media feed based on Mastodon. Over the years, our community has grown into something greater than a website. It’s a place of generosity, curiosity, and support. I’ve seen colleagues from around the world come together to discuss complex cases, challenge ideas, and stand by each other during difficult moments. For me personally, 99nicu has been an incredible journey. I’ve learned so much from all of you, and I feel truly grateful to have been part of building and nurturing this community together. Your willingness to share knowledge and perspectives, with the common purpose of improving care for newborns and their families, is such a source of inspiration. It’s also a powerful reminder that there is still a lot of good in the world. To everyone who has contributed over the past 20 years, whether by asking a question, sharing an insight, or simply being present, thank you ❤️ You are what makes 99nicu what it is. As we celebrate this milestone, I’m excited about what lies ahead. The need for connection and collaboration in neonatal care is as important as ever. With gratitude, Stefan PS. As a non-profit organization registered with the Swedish Tax Agency, we rely on community support. If you find value in 99nicu, please consider contributing an annual fee of 10 EUR, just click here!

Maybe this would be interesting for you to read: Neonatal Applications of Heliox: A Practical Review, from 2022 https://pmc.ncbi.nlm.nih.gov/articles/PMC8960277/

Here's the link to the paper: https://pubmed.ncbi.nlm.nih.gov/39900010/

We use it for laxation. I do not believe the level-3 NICUs uses it during the level-3 stay but many of our preterm patients get it when they go into more advanced post-menstrual ages, like ≥34 week. But as said, I think this is like a "Stockholm tradition" and I personally do not feel comfortable this is the right thing to do... On the other hand, many parents report that infants get "less grumpy and have better gut movements", but this could potentially also be a placebo effect.

UPDATE - find the Job Board here, for open positions and for CV upload. Please beta test