Neonatal Updates: Recent Nutritional Publications part 2.

Breast Milk and how to use it

Colacci M, et al. Growth and Development in Extremely Low Birth Weight Infants After the Introduction of Exclusive Human Milk Feedings. American journal of perinatology. 2016(EFirst). This is a before and after study from a center where they changed to “exclusive” human milk feedings. About 40 babies before and after the switch are included, all with a birth weight under 1 kg. In fact the group with “exclusive” human milk feeds were exclusive for at least 4 weeks and then had bovine products introduced when they reached 1500 g or 34 weeks, whichever occurred first. Why that was done is not described, maybe it was a cost issue, human milk based fortifier was used up until the switch over (or at least it was started when the babies were receiving 100 mL/kg/day of milk). The introduction of bovine fortifier (or cows milk based formula) may have been because as the babies get bigger it becomes more expensive to provide human milk-based products. More than 90% of the babies in each group received some maternal breast milk, but most (about 80%) got at least some formula.

The authors report growth outcomes, some clinical short-term outcomes, and long-term neurologic and developmental outcomes. Macronutrient intakes were not different between groups, and were not very good during the first week at least, 3 g/kg/d of protein, and 82 kcal/kg/d, feeds were started on average on the 4th day of life, on average. Of interest, the incidence of NEC was identical between the groups, at 10%.Growth outcomes were also not different, with the loss of about 1.5 weight z-scores between birth and discharge, finally all the scores on developmental assessment were just about identical between the groups.

Belfort MB, et al. Breast Milk Feeding, Brain Development, and Neurocognitive Outcomes: A 7-Year Longitudinal Study in Infants Born at Less Than 30 Weeks’ Gestation. The Journal of pediatrics. 2016. This is a cohort study from Melbourne of babies under 30 weeks gestation, for whom donor breast milk was not available. They analyzed breast milk intake during the first 28 days of life, and correlated the number of days that more than 50% of the intake was breast milk, and the daily breast milk intake, to outcomes at 2 years and 7 years and MRI brain volumes at term and at 7 years of age. 180 babies were in the study, and the more days you get more breast milk the more deep nuclear gray matter you have when you reach term.

At 7 years of age the babies who had more days with more than 50% breast milk had better performance on “IQ (0.5 points/d; 95% CI, 0.2-0.8), mathematics (0.5; 95% CI, 0.1-0.9), working memory (0.5; 95% CI, 0.1-0.9), and motor function (0.1; 95% CI, 0.0-0.2) tests.”

At 7 years of age the total brain size was somewhat bigger (about 2 cc for every day of breast milk >50%) which sounds like a lot to me, but it wasn’t significant when adjusted for covariates, in fact at 7 years none of the MRI volumes were significant after adjustment.

 Bharwani SK, et al. Systematic review and meta-analysis of human milk intake and retinopathy of prematurity: a significant update. J Perinatol. 2016. A systematic review and meta-analysis of observational studies of the effects of maternal milk (in this review studies were excluded if they were only examining the effects of donor milk, but 2 were included that used some maternal and some donor milk) on the development of RoP and of severe RoP. Despite the major limitations of these kinds of studies, and the difficulties in trying to meta-analyze them, there does seem to be a real association between receiving any amount of human milk and a reduced risk of retinopathy.

Rosas R, et al. Experimental study showed that adding fortifier and extra-hydrolysed proteins to preterm infant mothers’ milk increased osmolality. Acta Paediatrica. 2016. The authors here took breast milk from mothers who had delivered preterm and added a commercial fortifier (from Nestlé) at the usual concentration, recommended by the manufacturer, and then at a slightly higher concentration, and then with added oligopeptides at 2 different concentrations. They refrigerated the mixture and then measured the osmolality at intervals for 23 hours. Osmolality increased progressively, being around 296 for the unfortified breast milk, with standard fortification this increased immediately to 380 and then continued to increase more slowly up to about 450. With higher concentrations of fortifier, the immediate increase was to over 450, with not much difference when protein was added, and then continued to increase to about 530.

The composition of the Nestlé fortifier is somewhat different to the Enfamil and Similac that we use in Canada. There is an error in the publication, but I think that the fortifier is supposed to have 400 kcal/100 g (and not 4 as it says in the table!), the additional calories are mostly as carbohydrate (66g/100g) with very little fat (0.4g/100g). When you add the fortifier at the recommended concentration you supposedly add 20 kcal per 100 mL of milk, 1 g of protein, and 3.5 g of carbohydrate, and 0.02 g of fat; I can’t make that add up to 20 kcal, I think it is more like 18 kcal. Enfamil powdered fortifier in contrast has very little carbohydrate, so when you use at the recommended concentration you add 1 g of fat, 1.1 g of protein and almost no carbohydrate, per 100 ml. The Similac fortifier in contrast has a bit less protein (1g additional per 100 mL of breast milk) and 1.8 g of carbohydrate and about 1/3 g of fat. The Similac carbohydrates are “corn-syrup  solids” which is mostly glucose, whereas in the Nestlé FM 85 they are malodextrins, which are less osmotically active.

You clearly can’t extrapolate these new data to the other fortifiers, or to using higher concentrations of the other fortifiers with or without added protein, how important these numbers are is difficult to know, but osmolality closest to human milk is probably best. Currently it looks like the Enfamil fortifier increases osmolality the least, by about 24 just after it is added, but what happens to that over the next 24 hours I don’t know.

McLeod G, et al. Comparing different methods of human breast milk fortification using measured v. assumed macronutrient composition to target reference growth: a randomised controlled trial. The British journal of nutrition. 2016;115(3):431-9.

In this randomized trial 40 infants under 30 weeks were assigned to either get standardized nutritional management, or an individualized approach which required a weekly analysis of  a pooled milk sample from that week, and then adjustment of the fortification to achieve, I think, between 3.8 and 4.4 g/kg/d of protein and between 545 and 629 kJ/kg/d (that’s 130 to 150 kcal/kg/d), I say “I think” because that is only mentioned in the introduction and not in the methods, where they say they planned to target the upper range of those recommendations.

The study required the analysis of over 1,800 samples of breast milk. An enormous work load for just 40 babies. However they didn’t achieve any increase in nutritional intakes in the intervention group, and intakes in the intervention group were well below the targets. The reason for which seems to be that they arbitrarily limited fortifiers to maximum allowable concentrations (Standard fortifier powder (Wyeth): maximum 4 g/100 ml;
protein supplement: maximum 0·5 g/100 ml; and an extra calorie supplement: maximum 3·0 g/100 ml) As a result, and with the low power of this small study, they showed no improvement in any growth outcome with the intervention. With almost identical nutritional intakes in the 2 groups, this is hardly surprising. There are a couple of other surprising things, fortification was not started at all until the babies were on full feeds, so not until 20 days of age on average. The babies were discharged a 38 weeks, and only weighed 2.3 to 2.5 kg on average at discharge.

I think this idea still has a lot of merit, whether it is viable with the workload involved is questionable, but targeting substantially higher protein intakes than these achieved here, will likely improve growth, and fat-free growth at discharge, individualizing the supplementation of breast milk should be further investigated, in similar RCTs, but aiming for over 4 g/kg/d of protein. Perhaps the best model would be to enroll and study only infants with sub-optimal growth; those who have good growth (not just weight gain) on standard fortification, and here are many, will probably have little benefit from individual adjustments of fortification.

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Neonatal Updates: Recent Nutritional Publications part 1.

As there is no way I can catch up after the break, I will post a few ‘neonatal Updates’ to point my readers to things I found interesting over the last couple of months, this first group is all about nutrition.

Impacts of undernutrition

First off two animal studies:

Wedgwood S, et al. Postnatal Growth Restriction Augments Oxygen-Induced Pulmonary Hypertension in a Neonatal Rat Model of Bronchopulmonary Dysplasia. Pediatr Res. 2016. Neonatal rats exposed to room air or 75% oxygen were randomized to either get usual nutrition or to get reduced nutrition. This was done by either putting 10 rats in a litter, or 17. The rats who were 17 to a litter will automatically get less nutrition, as apparently the dam (the mummy rat) produces milk which is larger volume, similar in lactose and protein, but has a lower fat concentration. After 14 days of this they weighed only 24 grams compared to the controls that weighed about 33 g. The growth restricted rats were even smaller if they were also hyperoxic (21 g).

Individually, hyperoxia and growth restriction increased pulmonary arterial pressure, right ventricular wall thickness, and pulmonary arterial medial wall thickness, and led to fewer pulmonary vessels. The rat pups who were both growth restricted and hyperoxic were worse off than either of the comparison groups. They also did some metabolomics and other fancy analyses that I will let you read about yourselves. Basically though undernutrition (in this case specifically too little fat) makes the lungs more susceptible to oxygen toxicity.

Joss-Moore LA, et al. Alveolar formation is dysregulated by restricted nutrition but not excess sedation in preterm lambs managed by noninvasive support. Pediatr Res. 2016. This looks like a great study, unfortunately I found some of it hard to understand. Preterm lambs (we don’t know how preterm as the gestational age at delivery doesn’t seem to be in the manuscript) were intubated at birth and extubated within 3 hours to get non-invasive ventilation. They were then randomized to either have good nutrition and standard sedation, or have reduced nutrition, or excessive sedation (using pentobarbitol in all cases, around about 0.8 mg/kg/d for the usual sedation groups an 6 times as much for the high sedation group). I can’t tell you how much nutrition the restricted group received, the normal nutrition groups got a goal of 150 kcal/kg/d and the restricted group was “based on the volume of milk tolerated by historical preterm lambs managed by invasive ventilation”. In the results, the table 2 notes that the controls received 283 kcal/kg on day 20, but the restricted nutrition group got 211 kcal/kg less than that (I think), and basically didn’t gain any weight at all between birth and day 20.

There were major impacts on lung alveolarization, which is of course an important part of BPD, and which suggests that lungs need nutrition to grow and to repair.

And a human epidemiologic study:

Guellec I, et al. Effect of Intra- and Extrauterine Growth on Long-Term Neurologic Outcomes of Very Preterm Infants. The Journal of pediatrics. 2016;175:93-9 e1. This is an analysis of data from the EPIpage study, which was a regional cohort of babies born between 22 and 32 weeks gestation in 9 regions of France. They report the association between growth, from birth to 6 months of age, and neurologic and developmental outcomes.

They classify babies into appropriate and small for gestational age, and then into whether they gained or lost more than 1 Standard Deviation in weight, between birth and when they reached 6 months.

Babies who were AGA and lost 1 SD had worse outcomes, with much more cerebral palsy, and much more cognitive delay; both evaluated at 5 years of age. Those who stayed in their percentiles or gained weight (relatively) were similar.

Among the SGA babies there were only 5 who lost percentiles, the remainder either stayed on their percentiles or had some “catch-up”; those who had catch-up had in general slightly better outcomes than the SGA babies who remained in their percentiles, although the differences  may have been due to chance.

Good postnatal nutrition aiming at staying on the same percentile or improving percentiles if you are SGA should protect against BPD, and is associated with improved long-term neurologic and developmental outcomes. Improving growth outcomes is possible without increasing complications.

 

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Early neonatal outcomes in trisomy 13 and 18

One of the things that has changed greatly over the years, in my practice and in medical practice in general, is the approach to some congenital anomalies, particularly to serious chromosomal anomalies. Trisomy 13 and 18 specifically have seen an enormous change in the attitudes of many physicians; from an near-universal denial of active interventions to a more individualized approach, which takes into account the wishes and values of the parents, and recognizes that the lives of children with impairments are also of value. (I nearly started a new hashtag “trisomic lives matter”, then I thought better of it.)

Many infants who are live-born with these diagnoses can benefit from relatively modest medical interventions, and sometimes from more invasive treatments as well. Two recent articles from the American Journal of Perinatology demonstrate how things have changed. Both have sample sizes on the small side, compared to regional database studies, the first from a single centre (university of N Carolina) they include 32 fetuses approaching term with trisomy 13 or 18, and compared outcomes among those whose parents had elected to have some active interventions, and those who had chosen comfort care only.

Dotters-Katz SK, et al. Management of Pregnancy and Survival of Infants with Trisomy 13 or Trisomy 18. American journal of perinatology. 2016(EFirst). Intrapartum stillbirth only occurred among the babies with a decision for comfort care, and death on the first day of life only occurred (with one exception) among those in the comfort care group. It is interesting to note that more than 50% of the babies in each group survived to hospital discharge, so even if the decision is for comfort care, if you get through the first 24 hours, discharge to home is likely.

The second article only includes infants with trisomy 18 and starts at birth, admitted to one of 2 hospitals in Memphis.
Dereddy NR, et al. Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States. American journal of perinatology. 2016(EFirst).  There are 29 infants in this series, and their survival to discharge was somewhat lower, but still significant. They also happened to have more babies with very serious heart defects (most of the cardiac defects in trisomy 13 and 18 and VSDs), perhaps because of the way the cohort was put together, which may have affected survival. Among those babies who did not have ‘critical heart disease’ about half went home, whereas all but one of those with critical cardiac malformations died before discharge.

And by way of contrast, an enormous regional database study with nearly 2,000 babies (693 with T13 and 1,113 with T18), in such studies the amount of individual data available is usually much less, so there is no analysis of decision-making in this study, Meyer RE, et al. Survival of children with trisomy 13 and trisomy 18: A multi-state population-based study. Am J Med Genet A. 2016;170(4):825-37.

Among children with T13, 5-year survival was 9.7%;
among children with T18, it was 12.3%. For both trisomies,
gestational age was the strongest predictor of mortality.
Females and children of non-Hispanic black mothers had
the lowest mortality. Omphalocele and congenital heart
defects were associated with an increased risk of death for
children with T18 but not T13. This study found survival
among children with T13 and T18 to be somewhat higher
than those previously reported in the literature, consistent
with recent studies reporting improved survival following
more aggressive medical intervention for these children.

1 month and 1 year survival in that study were 24% and 11.5% for T13 and 36.1% and 13.4% for T18.

Barb Farlow, Annie Janvier, and I have a new article which will be appearing soon, which covers some of the same questions; of course, as soon as it appears there will be more discussion on this blog.

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Two New Publications

After a few weeks break (for a number of reasons), I’m ready to start blogging again! I’m sure you have all missed the succinct and perceptive critiques of the recent neonatal literature, but today I will start with 2 publications that cannot be criticized (at least not by me!) I’m proud of both of them, and hope you appreciate, and learn something, from them, they are both a little different to the usual research article or review:

Janvier A, Lantos J, Aschner J, Barrington K, Batton B, Batton D, et al. Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents. Pediatrics. 2016. This group of authors (or a slightly different iteration) previously published an article about how healthcare professionals should interact with parents in the NICU, the authors are all healthcare professionals who have had experience of the NICU as ‘users’, parents, grandparents, or sometimes both; some of the authors had babies who survived, others experienced a neonatal death. This new article is a meditation on how the NICU experience has affected us as individuals, and tries to give a balanced view, that the impacts are not all negative, and that the individuals we met who cared for our babies had profound impacts on us. We discuss our feelings of gratitude, our new perspectives, feelings of loss of control, making decisions with ‘the heart’, finding connectedness, resilience and humility, developing forgiveness and a renewed sense of dedication to quality patient care. We end with a series of recommendations which I reproduce here:

  1. Be aware that parents experience both negative and positive impacts after an NICU experience. Researchers examining these outcomes should investigate both sides of the story. Communications with parents should be balanced.

  2. Remain humble. Avoid sentences such as: “Parents don’t understand” or “If I were in their situation, I would not….” Too often, it is providers who do not understand.

  3. Tell parents that they did not choose the misfortunes that are happening to their infant, that there is nothing they could have done to prevent this. Remind them often that their infant is lucky to have parents who love him or her.

  4. Let parents know that positive transformations are possible.

  5. Temper discussions about risks with words about something good happening, such as resilience, love, and the chances of healing.

  6. Help parents prioritize their energy and how to recognize what they can and cannot control. Encourage them to let go where they can.

  7. Inform parents that life will not always be like this, that the roller coaster will become a train with a known destination. That one day, it will be better. That they are stronger than they think. That they have to believe it.

  8. We can be there for parents at tough moments or avoid them. Be there.

Rysavy MA, Marlow N, Doyle LW, Tyson JE, Serenius F, Iams JD, Stoll, BJ, Barrington KJ, Bell EF. Reporting Outcomes of Extremely Preterm Births. Pediatrics. 2016. This article is a discussion of how statistics are calculated and reported in neonatology. We note that there are many failures in published reports of perinatal statistics, often the denominator is not clear, or not complete. Such failures have major impacts on how we understand outcomes.

For example, a regional or national sample of extremely preterm deliveries may be considered to be “better” than a hospital series, but if infants born outside of tertiary centers are included, the implications for an infant about to be born in a tertiary center who has already had their steroids are limited. Similarly, statistics based only on NICU admissions, and not on live births may not be very applicable if delivery room death is a real possibility. Furthermore, the obstetric approach may be non-interventionist, leading to stillbirth, and if death of the fetus during labour is not described, then understanding outcomes may be impossible. In addition if the hospital policy is not to provide intensive care support at some specified gestational age, then survival at that gestational age will likely be very poor, and if the decisions are not described, then the results are of little meaning.

We give 7 recommendations for how statistics should be reported:

Describe the Source Population

Define a Study’s Inception Point

Stratify Outcomes by Gestational Age at Birth

Report on Decisions Regarding Treatment

Describe Outcome Definitions

Describe the Timing of Outcome Assessment

Report the Statistical Uncertainty of the Outcome

If universally followed, these recommendations would make statistics regarding survival much more meaningful.

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Causes and Consequences of Bronchopulmonary Dysplasia

Sullivan K, et al. The Association between Positive Tracheal Aspirate Cultures and Adverse Pulmonary Outcomes in Preterm Infants with Severe Bronchopulmonary Dysplasia. American journal of perinatology. 2016(EFirst).  This is an interesting study, with many limitations. 121 intubated VLBW preterm infants who had at least one Endotracheal bacterial culture are included. Outcomes of the babies and relationship with the results of the cultures were studied. The cultures were not performed as a routine, but whenever the treating team felt that they needed one. Which is the first problem with the study, we don’t know why the team wanted to have an endotracheal culture. 80% of the cultures were positive for potential pathogens, 30% had more than one. 30% had Pseudomonas and another 14% Klebsiella. Babies who had Gram negative rods in the cultures were more likely to have the adverse outcome, which was death or going home on oxygen.  Babies who had gram positive cocci in the cultures, in contrast, were not more likely to have severe BPD or death.

Previous data has shown a correlation between Ureaplasma cultures and BPD, but I don’t think there are many data about other bacteria in the endotracheal tube. In order to know whether these data are really showing a causative relationship, I think you would need firstly a study with all intubated babies having routine cultures at the same postnatal age, and then redo this sort of analysis. Then a randomized trial of treating the positive cultures with effective antibiotics would be needed to confirm that any association may be causative, and that you can do something about it.

Sanchez-Solis M, et al. Lung function gain in preterm infants with and without bronchopulmonary dysplasia. Pediatr Pulmonol. 2016. 71 VLBW infants were studied at 6 months corrected age, and again a year later. The VLBW babies with BPD had significantly lower FVC and FEF25-75 (an indicator of small airways function). When they restudied them, the trajectory of changes in both groups was similar, as they babies length increased, the lungs grew, but the differences between the BPD and non-BPD groups remained about the same; there was no catch-up in lung function.

Poon CY, et al. Pulmonary arterial response to hypoxia in survivors of chronic lung disease of prematurity. Archives of Disease in Childhood – Fetal and Neonatal Edition. 2016;101(4):F309-F13. In this study the pulmonary vascular reactivity to 12% oxygen inhalation (compared to 21%) of former preterm infants with and without BPD and controls was examined, there were 13 with BPD, 21 preterm without BPD, and 25 term born children examined at 9 to 12 years of age.

The technique that was used is completely new to me, using MRI, they measured the cross-sectional area of the pulmonary artery and the blood flow through the measured segment. They plot the changes in the 2 measurements during early systole,  and the slope of the regression is referred to as the pulse wave velocity (PWV). They then redo the PWV after exposing the children to hypoxia. Normal children, previously studied by this group have an increase in PWV with hypoxia. In this study the preterm born children with BPD had a greater increase in their PWV than the controls. The children were all healthy, but still have what appears to be an increase in pulmonary vascular reactivity (assuming that this technique is indeed reliable), even 10 years later.

Van Hus JWP, et al. Early intervention leads to long-term developmental improvements in very preterm infants, especially infants with bronchopulmonary dysplasia. Acta Paediatrica. 2016;105(7):773-81. This is a report of an RCT in a 176 infants who were either VLBW or less than 32 weeks. Infants were either enrolled in an Early Infant Behaviour and Intervention Program. and then followed at 6, 12 and 24 months with Bayley version 2, and at 5.5 years with the WPPSI IQ test and the Movement Assessment Battery for Children. Overall the motor scores were better in the group with the early intervention, and remained so throughout the follow up, The cognitive scores were a bit better with early intervention, but that may have been due to chance (“not significant”). In a subgroup analysis, of just the babies with BPD, both cognitive scores and motor function was improved with early intervention.

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Survival and outcomes of extremely immature babies, glass half empty or…

Anderson JG, et al. Survival and Major Morbidity of Extremely Preterm Infants: A Population-Based Study. Pediatrics. 2016. This publication is derived from data in a public health database, the data for which comes from ICD-9 codes of the hospital discharge records. There were over 16,000 babies born in California between 22 and 28 weeks gestation in the years 2007-2011, but only 7000 are included as they had linked birth records and hospital discharge records. Of these 7000, there were a surprisingly large number, about 1,000, with major birth defects or chromosomal anomalies, which makes me wonder whether these babies are representative of the whole 16,000. The babies with major birth defects or chromosomal anomalies were not included in the remainder of the publication.

The first survival figures presented are of very little interest “Among the infants born at 22, 23, and 24 weeks, survival to 1 year of age was 6%, 27%, and 60%, respectively”, I say “of very little interest” because these figures include babies who were left to die in the delivery room. As the mortality of the babies of this gestation who don’t get intensive care is 100% there is little point including them in any survival statistics, the proportion who receive active care, and the proportion of those who survive are what is important. Which the authors do subsequently: “When examining survival after attempted resuscitation, the rate of survival to 1 year at 22, 23, and 24 weeks was 31%, 42%, and 64%, respectively”.

Morbidities were also more frequent with decreasing gestation, but I am not entirely sure how accurate all the diagnoses are, discharge record codes are not necessarily always reliable. The 22 and 23 week babies had severe IVH, PVL, NEC and BPD more frequently than at 24 weeks or later, RoP requiring surgery was more frequent at 22, 23 and 24 weeks.

Sepsis occurred in around 2/3 of the babies under 25 weeks, and in an extremely high proportion of all their babies (48% of all the infants from 22 to 28 weeks). They used the ICD-9 code for neonatal sepsis, which seems to include early and late onset sepsis, and doesn’t seem to require a positive culture. In one source I saw it seems to also include NEC, so NEC might have been counted twice in some of these records. In any case, this is an extremely high proportion of babies with a discharge diagnosis of sepsis, In comparison the CNN data in 2014 show about 20% of the same gestational age group with late onset sepsis (and about 2.5% with early onset). I don’t know why these sepsis figures are so high, I haven’t seen rates this high from anywhere in the world that I can think of, which makes me worry about the reliability of these figures. As funding may be related to the ICD-9 codes then there is a pressure on discharge coders to include anything that can be put under the code, and as there are no clear definitions for the neonatal sepsis code, could performing a septic work-up for a suspicion of sepsis end up being tagged?

Similarly the code for NEC includes the notoriously difficult to define stage 1 NEC, and may well be an over-estimate of what would be considered definite NEC in other reports, stage 2 and higher (although, even then, diagnostic accuracy of pneumatosis is poor).

I am emphasizing these points as the authors present the proportion of babies who survived without these major morbidities, but if the diagnoses are inflated then these proportions are much lower than the reality. Some of the diagnoses are probably accurate (coding for surgery for retinopathy for example) for others perhaps less so.

The authors also do not give an estimate of the precision of these numbers, as you will all see in an upcoming publication in Pediatrics, we (that is, a group of investigators led by Matt Rysavy) propose, among other things, that such reports should always include the confidence intervals of the outcomes.

Consistent with data from EpiCure2, and consistent with common sense, babies born at 22 to 28 weeks in a hospital with a regional NICU were more likely to survive than if they were born in hospital with an intermediate level NICU. The differences were even greater for infants from 22 to 24 weeks gestation.

Holsti A, et al. More than two-thirds of adolescents who received active perinatal care after extremely preterm birth had mild or no disabilities. Acta Paediatrica. 2016

In contrast to those data are these very optimistic results from Sweden, they have already published details of their approach which they refer to as “active perinatal care” a co-ordinated approach to supporting the extremely immature baby, just before and after birth. They describe it like this “a universal and consistent policy of APC after all deliveries at the threshold of viability at 23-25 weeks of gestation. This management includes the centralisation of all deliveries at less than 28 weeks whenever possible, the administration of antenatal corticosteroids and tocolytics, the presence of a certified neonatologist at all deliveries at less than 28 weeks of gestation and resuscitation of all infants at 23-25 weeks of gestation with any signs of life”. They have already shown that this policy increases survival, without increasing short-term complications and they now present the outcomes in early adolescence of 132 children born from 23 to 25 weeks in the mid 1990’s.

3.8% of the extremely preterm adolescents had disabling CP (unable to walk), and no controls, 1.5% (2 subjects) had severe visual impairment, and 1.5% were deaf. As usual in these cohorts the most frequent impairments were cognitive; they performed Wechsler IQ tests on the preterm babies and the controls, 31% of the preterms and 5% of the controls were more than 2SD below the mean on full-scale IQ scores; 18% of them were more than 3SD below the mean (and no controls).

So you could say that these results are much worse than the general population, the glass is nearly 1/3 empty, or you could also say that they are remarkably good, and the large majority of the patients are doing extremely well, the glass is over 2/3 full.

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Moral Distress among nurses (and others).

This publication appeared on-line a couple of months ago, and still isn’t in print. Prentice T, et al. Moral distress within neonatal and paediatric intensive care units: a systematic review. Arch Dis Child. 2016. It is a systematic review from Melbourne, with the help of Annie Janvier, of the literature surrounding moral distress in health care workers in the NICU and the PICU. All of the studies included nurses, and some of them also studied other health care workers.

Moral Distress refers to subjective feelings of distress in response to the ethical challenges of health care work. It is a term which first appeared in the nursing literature, and, although other terms have been suggested, I think it fits. Moral residue is another term these authors refer to, which is the lingering feelings which persist after the “morally distressing” case has ended. As we deal with children and babies who are fragile, dependent, and may have life-long complications, the NICU and PICU are places where moral distress is likely to be frequent. How frequent it is, and what causes the situations most likely to lead to distress, where the questions that lay behind this systematic review.

They found 13 articles, of varying size and quality, (including one of ours); from the results of the systematic review article:

Common themes represented included disproportionate care, ‘aggressive’ use of technology, powerlessness, and communication around life and death issues. Interestingly, moral distress is generally reported as occurring because a provider feels she/he is ‘doing too much’….. The converse is rarely reported as causing moral distress, for example, deciding for palliative care in the face of uncertainty. Concepts of moral distress are expressed differently within nursing and medical literature.

One of their findings is the different ways in which moral distress is discussed in the articles, publications in the nursing literature frequently emphasize the subjective experience of the nurses, and the fact that they lack power and are having to provide interventions that they do not always agree with; they are sometimes portrayed as the victims of the aggressive care being perpetrated by the physicians. Whereas in the medical literature moral distress is described in terms of the objective situations that create confrontations or dilemmas. The reality is though, that physicians also experience moral distress (with about the same frequency as nurses), they also find themselves sometimes performing tasks and providing care which is against their own conception of what the best interest is for their patients.

What has been shown previously is that moral distress may lead to burnout, and decrease retention of staff. It is also probably unavoidable in intensive care, but we should, and could, work harder to minimize it, and minimize its impact.

 

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