What Matters Most After a Premature Birth? How Parents, Health Professionals and Adults Born Early See a Baby's Possible Outcomes

A plain-language guide to Ringsten and colleagues' 2026 review in the journal Neonatology, which gathered 24 studies on what people value most for preterm babies

When a baby is born very early, families and doctors sometimes have to weigh survival against the chance of lasting health problems. A 2026 review of 24 studies with more than 4,600 people found that parents and adults born preterm usually put survival first, while health professionals worried more about survival with severe disability, and that opinions varied widely within every group. The evidence is still uncertain, so each family's own values matter.

Why it matters what people value

Medical decisions are not only about facts. Two treatments might both help a premature baby, but one might lower the risk of a lung problem while slightly raising the risk of something else. Which choice is better depends on how much each of those outcomes matters, and different people can honestly answer that question differently. A research team based mainly in Sweden, with colleagues in Poland, Spain and Austria, set out to collect everything that has been learned about these personal judgements [1].

The question touches a great many families. Around 13.4 million babies, roughly one in every ten born worldwide, arrived too early (before 37 weeks of pregnancy) in 2020 [2]. The earlier a baby is born, the higher the risk of dying or of serious complications, and every extra week in the womb improves the chance of survival [3].

How families and doctors used to face these choices

In the neonatal intensive care unit (the NICU, the hospital unit for newborns who need special care), parents and professionals make important decisions together, yet for many years almost nothing was known about whether they valued the possible outcomes in the same way. In the 1990s, researchers at McMaster University in Canada set out to find out. They asked neonatologists (doctors who specialise in newborns), neonatal nurses, parents and teenagers, some of whom had themselves been born very small, to rate imagined childhood health conditions. The professionals gave lower scores to conditions involving disability: 64 of every 100 professionals, compared with 45 of every 100 parents, rated at least one condition as worse than death [4]. In a related survey, most parents believed every baby should be given a chance regardless of birth weight or condition, but only 6 in every 100 health professionals agreed, and the authors urged that decisions be made jointly [5]. A later study found that mothers' views, measured during pregnancy and again in the baby's first year, stayed much the same over time [6].

Since then, GRADE, a method used to write medical guidelines, has asked expert panels to consider how much people care about each outcome, but a team that applied it to 22 sets of national guidelines found few studies of local people's values and no settled way of doing this [7]. Earlier summaries of the research looked only at parents deciding before birth at the very edge of viability [8], or at what families want from hospital care in general [9]. Nobody had brought together the views of parents, professionals and people born preterm about all the outcomes that matter.

How the researchers studied the question

The new work is a systematic review: instead of running a fresh study, the team searched five large medical databases for every published study that asked people how much they care about different outcomes of preterm birth, then compared what those studies found [1]. They found 24 studies, with 4,613 participants in total. Sixteen studies used numbers, such as surveys and rating scales, and eight used interviews or group discussions. The studies came from 13 countries, mostly Canada, the Netherlands, the United States and the United Kingdom.

Because the studies asked their questions in very different ways, the researchers could not combine the results into single numbers. Instead they described the patterns they saw and rated how confident anyone can be in each finding.

What parents and adults born preterm said

Parents, and people who were themselves born preterm, generally put survival first [1]. In interviews, some parents said that above all they hoped to take their baby home alive. In one American study, parents' conversations centred on whether their baby would survive, while clinicians talked more about the brain and the possibility of disability [10].

Adults born early added an important voice. In the Netherlands, adults born extremely preterm who took part in group discussions said that quality of life should not be judged only by physical abilities, and that difficulties with movement could affect friendships and taking part in team sports [1][11]. In Norway, 11 adults born at 28 weeks or earlier, interviewed when they were 33, described gratitude for life despite physical, mental, social and educational challenges [12].

When parents of children aged 18 months to 7 years who had been born before 29 weeks were asked what they would most like to improve, 55 in every 100 chose development, 25 in every 100 chose breathing problems and general fragility, and 14 in every 100 chose feeding and growth; 19 in every 100 said they would not change anything [13].

What doctors and nurses said

Health professionals, on the whole, were more likely to feel that survival with severe disability could be worse than not surviving [1]. In a survey of 104 senior newborn doctors in Germany, Switzerland and Austria, only 1 agreed that everything possible should be done to keep a baby alive however poor the outlook [1]. Nurses in an American unit described a struggle to protect babies from pain and unnecessary discomfort [14], and in later surveys professionals named pain as the worst symptom of all [1].

Short-term complications: what worries families most

Some complications happen during the hospital stay. One is intraventricular haemorrhage, a bleed into the fluid-filled spaces inside the brain. In a study in Canada and the United Kingdom, 31 parents and 9 adults born very preterm (before 32 weeks) scored how serious different outcomes would be on a scale where 100 meant most critical. The typical (middle) score for death was 100, and for severe brain bleeding 90 [15]. In Saudi Arabia, mostly pregnant women using a computer-based decision tool also rated severe brain bleeding as the outcome they least wanted [16].

The published summary of the review says that health professionals ranked brain bleeding as the worst short-term problem, but the detailed results show that this ranking came from parents, pregnant women and adults born preterm. Professionals pointed instead to severe brain damage and to pain [1].

Where everyone disagreed, and why that matters

Perhaps the most important finding is that people within each group disagreed with one another. In one Canadian study, between 38 and 45 of every 100 mothers rated at least one imagined disability as equal to or worse than death, while the rest did not [1][6].

Even the word "severe" means different things to different people. When parents, professionals and adults born preterm in Canada read short descriptions of 18-month-old children with different difficulties, only 5 in every 100 called a delay in thinking and learning "severe", whereas 55 in every 100 said so for cerebral palsy (a condition affecting movement and posture) combined with delayed speech. Most disagreed with the way researchers usually define a severe disability [17]. Older studies had found that a severe impairment of thinking and learning was the most feared outcome [1][4], so how a question is asked clearly shapes the answer.

How sure can we be?

Not very, and the researchers say so openly. They rated their confidence in every finding as "very low" [1]. Many of the original studies used questionnaires that had never been properly tested, recruited particular groups of volunteers rather than a broad mix of people, and were carried out mostly in university hospitals in wealthy countries. Only a few included people who had been born preterm themselves. This does not make the findings useless, but it does mean they describe broad tendencies, not rules about what any single person thinks.

What this means for your family

If your baby is in the NICU, this research supports something you are entitled to expect: that your care team asks what matters to you rather than assuming they already know. There are no right or wrong values. Some families place survival above everything; others worry more about the life their child might lead. Both are understandable, and both deserve respect.

It can help to tell the team what you hope for and what you fear, to ask what words such as "disability" or "severe" would actually mean for daily life, and to come back to these conversations as your baby grows, because priorities can change over time. If you are finding the NICU stay emotionally hard, our article on parents' mental health in the NICU may be useful.

What researchers are working on next

The review's authors want future studies to use well-tested questionnaires, to describe outcomes clearly, including what they mean for daily life and over what time, and to include many more people who were born preterm [1]. A team led from the United Kingdom has already worked with former patients, parents and professionals to agree a shared list of 12 outcomes that newborn studies should measure, including survival, brain injury, movement, learning and quality of life [18]. The next step is to learn how much each of those outcomes matters, and to whom.

The bottom line

Parents, adults born preterm and health professionals do not always see a premature baby's possible futures in the same way, and people within each group differ too. The evidence is still uncertain, which is exactly why your family's own values belong at the centre of every important conversation about your baby's care.

References

  1. Ringsten M, Färnqvist K, Wachtmeister V, et al. Values and Preferences of Preterm Infants' Health Outcomes from the Perspective of Parents, Healthcare Providers, and Children or Adults Born Preterm: A Systematic Review. Neonatology. 2026:1. doi:10.1159/neo/adsag012 ↩
  2. Ohuma EO, Moller AB, Bradley E, et al. National, regional, and global estimates of preterm birth in 2020, with trends from 2010: a systematic analysis. Lancet. 2023;402(10409):1261-1271. doi:10.1016/S0140-6736(23)00878-400878-4) ↩
  3. Manuck TA, Rice MM, Bailit JL, et al. Preterm neonatal morbidity and mortality by gestational age: a contemporary cohort. Am J Obstet Gynecol. 2016;215(1):103.e1-103.e14. doi:10.1016/j.ajog.2016.01.004 ↩
  4. Saigal S, Stoskopf BL, Feeny D, et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA. 1999;281(21):1991-1997. doi:10.1001/jama.281.21.1991 ↩
  5. Streiner DL, Saigal S, Burrows E, Stoskopf B, Rosenbaum P. Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics. 2001;108(1):152-157. doi:10.1542/peds.108.1.152 ↩
  6. Saigal S, Stoskopf BL, Burrows E, Streiner DL, Rosenbaum PL. Stability of maternal preferences for pediatric health states in the perinatal period and 1 year later. Arch Pediatr Adolesc Med. 2003;157(3):261-269. doi:10.1001/archpedi.157.3.261 ↩
  7. Zhang Y, Coello PA, Brożek J, et al. Using patient values and preferences to inform the importance of health outcomes in practice guideline development following the GRADE approach. Health Qual Life Outcomes. 2017;15(1):52. doi:10.1186/s12955-017-0621-0 ↩
  8. de Boer A, de Vries M, Berken DJ, et al. A scoping review of parental values during prenatal decisions about treatment options after extremely premature birth. Acta Paediatr. 2023;112(5):911-918. doi:10.1111/apa.16690 ↩
  9. Hurt L, Odd D, Mann M, et al. What matters to families about the healthcare of preterm or low birth weight infants: A qualitative evidence synthesis. Patient Educ Couns. 2023;115:107893. doi:10.1016/j.pec.2023.107893 ↩
  10. Lemmon ME, Huffstetler H, Barks MC, et al. Neurologic Outcome After Prematurity: Perspectives of Parents and Clinicians. Pediatrics. 2019;144(1):e20183819. doi:10.1542/peds.2018-3819 ↩
  11. de Boer A, De Proost L, de Vries M, Hogeveen M, Verweij EJTJ, Geurtzen R. Perspectives of extremely prematurely born adults on what to consider in prenatal decision-making: a qualitative focus group study. Arch Dis Child Fetal Neonatal Ed. 2024;109(2):196-201. doi:10.1136/archdischild-2023-325997 ↩
  12. Vederhus BJ, Benestad MR, Drageset J, Kolltveit BH. Experiences of adults born extremely preterm -The impact of prematurity throughout their lives into adulthood. Early Hum Dev. 2025;203:106228. doi:10.1016/j.earlhumdev.2025.106228 ↩
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  15. Mitra S, Hatfield T, Campbell-Yeo M, Dorling J, Johnston BC. Evaluation of Health-Related Values and Preferences of Adults Who Were Preterm Infants and Parents of Preterm Infants Concerning Use of Prophylactic Cyclooxygenase Inhibitor Drugs. JAMA Netw Open. 2023;6(3):e232273. doi:10.1001/jamanetworkopen.2023.2273 ↩
  16. AlFaleh K, Alluwaimi E, AlOsaimi A, et al. A prospective study of maternal preference for indomethacin prophylaxis versus symptomatic treatment of a patent ductus arteriosus in preterm infants. BMC Pediatr. 2015;15:47. doi:10.1186/s12887-015-0353-4 ↩
  17. Synnes A, Chera A, Richter LL, et al. Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders. Children (Basel). 2023;10(5):880. doi:10.3390/children10050880 ↩
  18. Webbe JWH, Duffy JMN, Afonso E, et al. Core outcomes in neonatology: development of a core outcome set for neonatal research. Arch Dis Child Fetal Neonatal Ed. 2020;105(4):425-431. doi:10.1136/archdischild-2019-317501 ↩