Parent views about care of infants born at risk of neonatal hypoglycaemia

Abstract

Neonatal hypoglycaemia (low blood glucose concentrations) is common soon after birth, and can cause brain injury. In Aotearoa New Zealand Māori, Pacific and Asian babies are most likely to be born at increased risk. Care of these babies usually includes repeated blood tests and often admission to an intensive care unit. Thus, their families often experience considerable practical, physical and emotional stress. However, little information is available about how families experience this care pathway, or how it might be improved to appropriately address specific cultural preferences. Three articles in this issue of the Journal report studies of affected Māori, Pacific and Asian families, each conducted and interpreted from a specific cultural lens. They show that even when concerns were consistent, the lived experience of these differed between groups, and the best approaches to support families are culturally and context specific. These findings will be used to inform future practice recommendations.

What is neonatal hypoglycaemia?

Neonatal hypoglycaemia (low blood sugar concentrations in newborn babies) is a common problem that occurs soon after birth. This is because before birth, babies receive a constant supply of glucose (sugar) across the placenta from the mother. Once the umbilical cord is cut, the supply of glucose stops, and the baby must adapt to regulating its own blood glucose concentrations (Kalhan and Parimi, 2000). In the short term, this adaptation involves a series of changes in hormones and enzymes to allow production of glucose from body stores until milk feeding is established; a process that usually takes 2–3 days (Harding et al., 2024). Not surprisingly, this process of ‘metabolic transition’ is less effective in some babies, and blood glucose concentrations fall below normal and take longer to stabilise, resulting in hypoglycaemia.

Glucose is the primary fuel source for the brain. Since newborns have large brains relative to their overall size, the brain consumes almost all of the available glucose in a newborn baby (Bier et al., 1977; Powers et al., 1998). Thus, a decrease in blood glucose concentrations results in a decrease in fuel supply to the brain. If severe enough for long enough, this can result in brain injury (Anderson et al., 1967). Babies with severe hypoglycaemia can develop seizures, blindness, cerebral palsy, and even die (Roeper et al., 2020). For this reason, much effort is directed towards prevention, detection, and timely treatment of neonatal hypoglycaemia, to avoid permanent brain injury.

Risk factors

Although hypoglycaemia can occur in any baby, some have characteristics that put them at higher risk. These include babies who are born with reduced fuel stores (e.g. because they are born preterm or have not grown well and are small at birth), and babies who have altered concentrations of hormones such as insulin (e.g. having a mother with diabetes or born large; O’Brien et al., 2023).

Overall, approximately 25%–30% of all newborn babies will fall into one of these risk categories, and approximately half of these will develop hypoglycaemia (Harris et al., 2012). Thus, neonatal hypoglycaemia is one of the commonest problems in clinical care of the newborn.

Importantly, the frequency of these risk factors varies in different populations. For example, in Aotearoa New Zealand, diabetes in pregnancy is more common in Pacific and Asian ethnicities than in those of European origin, whereas preterm birth and small size at birth are more common in Māori (Indigenous people of Aotearoa; Jowitt, 2016). Thus, people of Pacific, Asian and Māori origin are most likely to give birth to a baby at risk of hypoglycaemia, and their families are also most likely to experience the care pathway for a baby born at risk of hypoglycaemia.

Care for babies at risk

Unfortunately, it is not possible to detect neonatal hypoglycaemia by looking at the baby. Although some babies become unwell, their signs are often non-specific, such as poor feeding or sleepiness (Hoermann et al., 2022). Most babies who have these signs do not have hypoglycaemia, and most babies with hypoglycaemia initially appear perfectly well. The only way to detect hypoglycaemia is to measure the glucose concentrations in the blood. This is usually done by taking a small blood sample from the baby’s heel, a ‘heel-prick’, and measuring the glucose concentrations either at the cotside or in the laboratory.

It is recommended that all babies born at risk of neonatal hypoglycaemia, and any with signs that might indicate hypoglycaemia, are tested promptly. For those born at risk, this involves blood testing in the first 1–2 hours after birth, and then repeated testing at 3–4 hourly intervals for 12–24 hours if blood glucose concentrations remain normal (Harding et al., 2024).

Babies whose blood tests reveal low glucose concentrations but who are otherwise well are commonly treated with a dextrose (sugar) gel, which is rubbed inside the baby’s cheek, and encouraged to feed before the blood test is repeated (Harris et al., 2013). Sometimes formula feeding is recommended, particularly if breastmilk supply is insufficient. Regular testing continues until the blood glucose concentrations have been normal for 12–24 hours. One study reported that the median number of blood tests for a baby born at risk of neonatal hypoglycaemia was 9 (range 1–22; Harris et al., 2012).

If blood glucose concentrations do not improve after dextrose gel and feeding, or if the baby is unwell, administration of dextrose intravenously via a ‘drip’ is required (Harding et al., 2024). This almost always requires admitting the baby to a neonatal special or intensive care unit (NICU) for a few days, resulting in separation from the mother and making breastfeeding more difficult.

Care during pregnancy and birth in Aotearoa New Zealand

Aotearoa New Zealand has a publicly funded maternity care system that provides free antenatal and postnatal care, although accessing these services may incur associated costs, such as travel and additional tests. Lead Maternity Carers (LMCs), who are usually midwives, either self-employed or employed by public hospitals, provide continuity of primary care during the antenatal period, the birth, and for both mother and baby for 6 weeks after the birth. There is also the option to pay for maternity care or specialist services and use an obstetrician in private practice as their LMC. National guidelines provide recommendations on situations in which consultation or transfer of care should occur between the LMC and other healthcare providers for secondary or tertiary care (Te Whatu Ora, 2023). Diabetes in pregnancy and poor fetal growth, common risk factors for neonatal hypoglycaemia, are some of the conditions for which consultation with or transfer to specialist services is recommended.

Most births occur in hospital in Aotearoa New Zealand, with only a small proportion (4%) of home births (Te Whatu Ora, 2022). Specialist publicly funded obstetric and paediatric care, including availability of a NICU and capacity to administer intravenous dextrose, are available only at secondary and tertiary maternity facilities (total 18 nationally; Te Whatu Ora, 2023). Thus, many who are likely to give birth to a baby at risk of neonatal hypoglycaemia will need multidisciplinary care in addition to an LMC during the pregnancy, and will be advised to attend a secondary or tertiary facility for the birth. Given Aotearoa New Zealand’s widely dispersed population, this often involves travelling some distance from home, sometimes repeatedly for antenatal appointments. Birthing and postnatal care may occur in an unfamiliar environment with unfamiliar carers. The travel burden may disproportionately affect women in rural areas or those with limited resources, posing challenges to equitable access to care. Compared with care in a primary setting, higher levels of care are associated with increased interventions, lower rates of breastfeeding and reduced satisfaction (Singh and Newburn, 2000).

Parental experiences

It will be apparent from the descriptions provided above that birth of a baby at risk of neonatal hypoglycaemia is common, invokes a healthcare pathway that is potentially intrusive and resource intensive, and is likely to result in considerable stress for the family. Although we are aware of no literature directly related to neonatal hypoglycaemia, there is substantial evidence that lack of familiarity with healthcare providers, the need for transfer away from home and familiar support structures, and having a baby admitted to NICU are associated with distress amongst users of healthcare systems. Interestingly, distress in parents of babies admitted to NICU does not appear to be related to the severity of their baby’s illness (Brooks et al., 2012). Further, watching their baby have a heel-prick blood test and perceiving their baby to be in pain is recalled by parents as one of the most distressing experiences of their NICU stay (Grosik et al., 2013).

Some measures can be taken to ameliorate some of this distress, but these can be challenging in the context of a baby born at risk of neonatal hypoglycaemia. For example, continuity of care by a trusted provider reduces anxiety, but many babies born at risk of neonatal hypoglycaemia require additional care by specialist staff who are unfamiliar to the family. Parents of babies requiring heel-prick blood tests have reported that they would like information about this 2–3 weeks before the birth (Kasem et al., 2022), but not all babies born at risk of neonatal hypoglycaemia can be identified before birth, and not all babies who develop neonatal hypoglycaemia have identified risk factors (Hawdon et al., 2016). Parental distress on perceiving their baby to be in pain can be reduced by their being able to contribute to relieving the pain (Gale et al., 2004), such as through breastfeeding and skin-to-skin contact. However, the reasons for a baby being born at risk of neonatal hypoglycaemia often stem from pregnancy complications that limit parent participation at the time of the blood test, particularly in the first few hours after the birth.

Clinical Practice Guideline and how these studies contribute

Clinical practice guidelines are systematically developed documents intended to assist clinicians in making evidence-based decisions, ensuring consistency in care and reducing variability. There is evidence that the introduction of high-quality guidelines leads to both improved process of care and also improved outcomes (Grimshaw and Russell, 1993). For example, evidence-based clinical practice guidelines provide recommendations for patient education, counselling and behavioural interventions for conditions as diverse as cardiac rehabilitation (Wenger et al., 1995) and treating nicotine dependency (Montalto, 2002).

There are many uncertainties about best care for babies born at risk of neonatal hypoglycaemia. These include who should be tested, the best timing of testing, optimal prevention and treatment options, and even the blood glucose concentrations at which hypoglycaemia should be diagnosed and treated (Harding et al., 2024). This uncertainty has contributed to a wide variation in clinical practice around the world, including in Aotearoa New Zealand (Rajay and Harding, 2021). In Aotearoa New Zealand, a group has been working on developing a national guideline to help improve care of babies born at risk of neonatal hypoglycaemia and their families; Te Tohu Waihonga – Aotearoa New Zealand Clinical Practice Guideline for Neonatal Hypoglycaemia (Te Tohu Waihonga Guideline Group, 2025).

The process of developing high quality evidence-based guidelines is lengthy. A multidisciplinary panel, which includes consumers, is convened to develop the questions that the guideline should answer, review the available evidence for each question, and prepare recommendations for practice (GRADE Working Group, 2013). Importantly, the steps between assembling the evidence and making a recommendation (the ‘Evidence to Decision’ process), include consideration not only of published medical evidence about the advantages and disadvantages of possible interventions, but a number of other important factors. These include the value people place on the different outcomes being considered, the likely effects of any possible recommendations on health equity, and their overall acceptability and feasibility.

In preparing evidence for the Te Tohu Waihonga guideline panel to consider, the evidence synthesis team were unable to identify information about these important factors in the Aotearoa New Zealand context. They therefore undertook a study, the Whānau Experiences Study, to specifically seek the views of families who had experienced the care of a baby born at risk of neonatal hypoglycaemia about issues that were being addressed in the guideline development process, such as their experiences of and preferences for detection, prevention, treatment, and follow-up of neonatal hypoglycaemia. Consistent with the equity focus of the Te Tohu Waihonga guideline development process, and noting that ethnic-specific service delivery has been identified as an action that can reduce social and economic inequalities (Ministry of Health, 2002), the investigators also recognised the need to acknowledge and address culture-specific aspects of these families’ views. This resulted in three separate arms of the study, each addressing the same questions, recruiting participants from the three ethnic groups in Aotearoa New Zealand at highest risk of neonatal hypoglycaemia; Māori, Pacific and Asian. The results of these three studies are reported in this issue of the Journal (Rogers et al., 2025; Ulyatt et al., 2025; Walsh et al., 2025).

Key findings and future directions

The presentation of three studies addressing the same questions and using a similar study design, in three different cultural groups provides a unique opportunity to consider their different perspectives. First, although there was some overlap of investigators between groups, the interviews and analyses were undertaken entirely independently, and each was interpreted within a different cultural framework. The result is an analysis framework specific to each study, in keeping with the specific lens appropriate for each ethnic group. This has provided insights into how each participant group approached and interpreted their interactions with the healthcare system before and around the time of the birth of their baby.

Second, there were some issues that concerned almost all participants across all three study groups, such as heel-prick blood testing. Almost all participants, for example, expressed a desire for more information about this, and to be involved in caring for their baby during the testing. Despite this commonality, the way these concerns were expressed, and the context in which the issues arose, were very different across the three participant groups, as may be expected given the different lenses applied. This suggests that even when concerns are consistent, the lived experience of different groups varies, and the best approaches to support families are culturally specific.

Third, each study reports challenges in interaction with the healthcare system similar to those reported across the world, such as the desire for more consistent and personal interaction with caregivers and more information with greater time to consider it. However, the details of these challenges, and participant response to them, are clearly context-specific. Thus, these three studies provide unique insights that could not have been derived from a review of the international literature.

Finally, each of these studies has limitations that may restrict their generalisability to other participant groups and other contexts. These include limited sample size, recruitment limited to participants in a single clinical trial (with the exception of three participants in the Māori study), presentation of views of participants of different ethnicities as if from a single group (Asian and Pacific studies), and a focus on a single clinical pathway (babies at risk of neonatal hypoglycaemia) independent of the outcome for the baby or of other previous or concurrent participant experiences.

Despite these limitations, these three studies provide unique insights into experiences of parents from groups most likely to have a baby born at risk of neonatal hypoglycaemia in Aotearoa New Zealand. The findings will be used to inform the recommendations of Te Tohu Waihonga – Aotearoa New Zealand Clinical Practice Guideline for Neonatal Hypoglycaemia which is currently in development, and may be useful for other guideline development groups and healthcare practitioners in the future.