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After reading this article, you should be able to:
- Understand the restraints children with cardiac conditions face with regards to meeting their nutritional needs;
- Appreciate the decision-making process required when selecting the best feeding regime for hospitalised neonates;
- Identify what assistance can be provided to parents by neonatal support workers;
- Understand the value of a multidisciplinary team in managing feeding for post-operative neonatal patients.
Introduction
Optimising nutrition for neonates is vital to support rapid growth, brain development, immune system maturation and the establishment of a healthy gut microbiome. Breastfeeding is widely recognised as the gold standard for infant nutrition owing to its optimal balance of nutrients and bioactive components1. The World Health Organization (WHO) and the United Nations Children’s Fund (UNICEF) recommends that all infants should be exclusively breastfed for the first six months of life and continue to receive breast milk until two years of age to supplement other foods2.
Breastfeeding is also associated with a reduced risk of several acute and chronic diseases in both women and their infants2. The health benefits of breastfeeding are particularly important for sick preterm infants, which include a reduced risk of late-onset sepsis, necrotising enterocolitis (NEC) and ventilator-associated pneumonia3.
In this article, we explore how healthcare professionals can provide nutritional support when ailing infants cannot always receive breast milk or be breastfed. In such circumstances, it becomes necessary to consider how to optimise the child’s nutrition and the appropriate selection of milk.
Perspectives on formula feeding versus breast milk can be sensitive and, at times, contentious. The needs of both the mother and child need to be held to the highest regard — including the mother’s right to opt out of breastfeeding. Exploring the realms of this debate is beyond the scope of this article, as the focus is on the nutritional deficit and specific circumstances of unwell neonates.
In this case-based discussion, we will follow two patients with cardiac conditions and provide insight on the supporting advice provided with regard to feeding management and optimising nutritional intake. Although the focus of the article is neonatal patients with congenital heart disease (CHD), the principles can be broadly applied to other health conditions where the mother’s capacity to breastfeed is restricted.
Nutritional demands and medical barriers to feeding for infants born with congenital heart disease
The estimated prevalence of CHD diagnosed in England in 2021 was 67.2 per 10,000 births4. Children with CHD are prone to nutritional challenges and are at risk of undernutrition. For those with unrepaired CHD, growth is often compromised owing to high energy expenditure and poor nutritional intake. This is a result of feeding intolerance, fluid restriction and impaired absorption5.
CHD is associated with an increase in oxygen consumption. Oxygenated and deoxygenated blood is often mixed, which can increase cardiac workload as demands are not being met. This can contribute to increased pulmonary pressures and catecholamine secretion6. With these extra pressures on the heart, the process of breastfeeding may not be appropriate. The process of feeding is an organised pattern of sucking and pausing to allow for a bolus of milk to pass through the oesophagus while avoiding aspiration.
Infants with certain cardiac conditions may face challenges with breastfeeding owing to compromised energy levels, fatigue and difficulty in coordination. CHD impairs oxygen delivery to the body; therefore, an increase of metabolic demands can exacerbate feeding difficulties, as these babies often tire quickly6. In the process of breastfeeding, a combination of sucking and swallowing can lead to an increased work of breathing, which puts greater strain on the heart. For cardiac babies, such strain can be detrimental6.
Other associated genetic conditions, such as Down’s syndrome and DiGeorge syndrome, also pose challenges. Children with these conditions often have low muscle tone, along with differences in gastrointestinal absorption, which can impact development7.
In the first few days of life, many sick infants will receive parenteral nutrition while in hospital. In severe CHD cases, fluid restrictions or the need for supplemental nutrition through nasogastric (NG) or gastrostomy tubes may be necessary to ensure adequate calorie intake. However, it is important to prepare and ensure that suitable milk is available for when the infant is able to transition to enteral nutrition. The nutritional composition of breast milk contains ideal ratios of carbohydrates, proteins, fats, vitamins and minerals tailored to the infant7. Specialised care, including lactation support and close monitoring, is essential to tailoring feeding strategies and supporting growth while managing the underlying condition8,9.
Breast milk supply
Along with the child’s lack of physical capacity, breastfeeding can also be limited owing to a lack of supply from the mother. For example, mothers may be physically unable to breastfeed if they experience a prolonged recovery post-labour. Children diagnosed antenatally with CHD are often delivered via an elective C-section for safety reasons. A C-section will likely reduce a mother’s ability to immediately bond with their child, which stems from the physical separation that occurs during the post-operative period. This, combined with the effects of excessive stress that are commonly experienced by parents of unwell neonates during hospitalisation, can inadvertently disrupt the production of milk (see below for more detail)10.
Depending on the circumstances of the birth, a period of separation could last for an extended period of time. Although a midwife will be able to support the mother to express their breast milk during a separation, its production might be delayed if there has been insufficient opportunity for physical contact, holding and bonding. The post-delivery bonding time is often referred to as the golden hour. This is because when a mother holds their child, it helps them to produce the hormone oxytocin.
During the golden hour, the level of oxytocin is maintained and increased via a reflex. This reflex mainly occurs when a mother holds the baby, hears the child cry or smells them. However, if the child is admitted into hospital, then these reflexes are not being stimulated. This in turn has a negative effect on the production of breast milk, which causes a decrease in supply or stops flow altogether11.
For some mothers, this can be experienced when their child is admitted into hospital or if they themselves are delayed from discharge post-birth. Often, these mothers receive limited support and, when combined with the general stresses that come with hospitalisation, the mother’s wellbeing is negatively impacted, which in turn affects milk production.
The mother’s dietary intake also needs to be considered. The nutritional demands of sustaining lactation are greater than those of pregnancy for women. During the first six months of the postpartum period, infants generally double their birth weight. Therefore, the amount of milk produced during the first six months postpartum is equivalent to the amount of energy a mother requires throughout her entire pregnancy12,13.
Certain medicines (e.g. chemotherapy drugs) can also limit accessibility to breast milk13,14. This is primarily owing to the fact that risk of exposure to such toxic medicines outweighs the necessity for breast milk in such cases.
Formula use during hospitalisation
Given the medical barriers mentioned previously, parents may opt to use formula milk during their hospital stay. Parents must carefully consider various factors to ensure the best nutritional support for their child’s growth and development. With the support of a dietician, a formula should be selected that meets established nutritional guidelines and is fortified with essential nutrients, such as iron, omega-3 fatty acids and vitamins. A major benefit of formula milk is the immediate availability. This provides convenience for parents when breastfeeding is not an option or the supply available is insufficient. In addition, formula milk is specially designed and enriched with calories, protein and nutrients to meet the infant’s needs. Allergen-free options, such as hypoallergenic or lactose-free formulas, also offer added benefits15,16.
A limitation of formula milk is the lack of immunological components. Unlike breast milk, formula does not provide antibodies or other protective bioactive components. This can lead to a higher risk of infections. Formula-fed neonates may be more susceptible to infections, such as NEC, especially if they were born prematurely. The severity of this type of infection should not be taken lightly. The use of formula milk is also associated with poor digestion issues, which leads to an increased risk of constipation or gastrointestinal upset17. Consideration should also be given to socioeconomic factors, including costs and whether families will have sufficient access to formula milk16.
Providing lactation support and optimising breastfeeding
If the mother and infant can breastfeed, attention and support should be given to enable the establishment of a solid social-emotional connection. This is an essential component of establishing a positive feeding experience. As described above, the bonding process can be impacted if the birth was complex or if the infant required immediate medical attention.
Holding and skin-to-skin, also known as kangaroo care, contact are examples of pre-feeding activities that promote feeding confidence and can improve milk production by triggering the milk letdown reflex8,14. The mother’s nutritional intake is equally significant. Mothers should be consuming a balanced diet rich in proteins, healthy fats and complex carbohydrates, with a focus on good hydration and avoiding excessive consumption of caffeine or alcohol12.
Neonatal support workers should demonstrate several techniques to reduce distress for both mother and child when a cardiac condition can be restrictive. For instance, a mother, where appropriate, can breastfeed for a short period of time, which is often no more than ten minutes. This allows for necessary breast emptying for the mother and provides an opportunity to bond. This breast emptying is also referred to as comfort feeding. In these instances, the remaining volume of feed should be given through an alternative route. This can be through the nasogastric tube or, if possible, orally via a bottle with a slow-paced teat to reduce the work of breathing. The milk given in the bottle can either be breast milk expressed through a pump or, if breast milk has not been selected, appropriate formula.
If the mother’s milk production needs to be increased, there are strategies that can be implemented. If the infant is not actively breastfeeding, frequent breast emptying can be encouraged with regular pumping every two to three hours. This is because the process of pumping will help to stimulate milk production8,10. It may be possible to then offer the milk through an alternative route so that the infant gains the nutritional benefits of breast milk9.
To keep milk volume high, mothers can also use a resource known as a ‘bonding square’. Bonding squares are small pieces of soft material. They can be knitted, crocheted or just consist of bits of fabric. These squares are used to encourage bonding between mother and child through sensory perception. One square will be placed beside the child, as close to their skin as possible. The other square is kept with the mother — for example, tucked under the mother’s bra or within a top. Every 12 hours, these squares should be swapped over, so the child is able to smell the mother, and the mother is able to smell their child. This should be done when skin-to-skin contact is not possible. Bonding squares are very helpful for breastfeeding mothers, as having the smell of their baby can help activate the hormones needed for milk production.
Medicines, such as domperidone, can be used to increase lactation; however, within the NHS, this is not protocol and is often limited to same sex or transgender couples where the non-birthing partner would like to breastfeed. Owing to the extrapyramidal side effects of domperidone, this risk outweighs the benefit and is not routinely prescribed18.
However, there are non-medicinal remedies that can support milk supply. Studies suggest that an increased consumption of fennel seeds could increase prolactin, which is the hormone required to encourage milk production. Neonatal support workers often encourage the consumption of fennel tea for this added benefit, along with ensuring the mothers are well hydrated19.
A neonatal support worker can also assist mothers with breastfeeding post-surgery. When a CHD patient has had a successful repair and the medical team have advised that breastfeeding can occur, mothers can be supported with the correct positioning to aid effective feeding. One of the main positions is known as a ‘cradle hold’, whereby a mother will lie a baby across their lap to face them, and the baby’s head will be resting on their forearm. This position enables the baby’s head to be positioned with their nose towards their mother’s nipple and will encourage them to smell the milk and eventually latch on.
Assessing the patient utilising the multidisciplinary team
When judging how to approach feeding with an unwell cardiac infant, the guiding principle is to optimise nutrition by assessing the specific requirements of the child and monitoring their intake. Optimising nutrition for sick neonates requires a comprehensive approach, combining maternal support, feeding adaptations and close medical supervision. By addressing both maternal and infant needs, caregivers can significantly improve outcomes20,21.
Cardiologists may approach these children with their first thoughts being directed towards preserving the heart; however, it is important to be holistic and consider the long-term health needs of the patient and family. These children need to grow and develop to have the best outcomes following a surgical intervention. When assessing the child, their age, weight and presenting complaint all contribute to decision-making on how to best feed the child. Working closely with dieticians, neonatal support workers and the wider multidisciplinary team can aid this holistic approach. Pre-surgery, patients are followed closely by the nursing team. Patients’ weight and height are recorded regularly — two to three times a month — and mapped against a growth chart.
Pharmacists are ideally placed to provide guidance on a selection of medicines for the child or by reviewing the mother’s medicines. For example, a child may have feeding intolerance that is secondary to gastric reflux, and the pharmacist will be able to offer advice on appropriate treatment. Options, such as proton pump inhibitors or the use of alginic acid sachets, can be explored, along with counselling support to maximise effect and advise on administration and formulation considerations5,20.
As medicines experts, pharmacists can provide information on what medicines a mother can safely take when lactating. This is paramount to the care of both the mother and child and may involve carefully balancing different medicines-related risks and benefits. In collaboration with the dietician, pharmacists should also provide support to ensure that volume intake and output remains stable, supporting the medical team if it becomes necessary to prescribe diuretics. Each CHD patient is reviewed according to their condition and treatment plans are individualised to align with their diagnosis and physical and social needs.
Case examples
Case 1: A sick cardiac patient whose mother is struggling to produce milk
A six-week-old infant, born at term, was admitted to the cardiac unit at birth because of supraventricular tachycardia (SVT). The patient was managed acutely and then stabilised on oral propranolol for maintenance therapy to prevent recurrence. The infant has remained stable with no further SVT episodes reported.
The family now seeks support to re-establish breastfeeding. The mother has faced challenges with milk production during this hospitalisation, predominantly owing to C-section healing and stress. With this unexpected admission after delivery, the patient has faced a delay in breastfeeding initiation. This in turn has impacted the mother, with reduced breast stimulation and limited interaction with the child. The infant is currently receiving formula supplementation but shows a willingness to latch, suggesting that breastfeeding may be successfully re-established with appropriate intervention.
Non-pharmacologic measures, such as frequent pumping and lactation counselling, are critical first-line strategies to stimulate milk production. Where appropriate, NHS guidance suggests that mothers express 8 to 12 times within 24 hours to stimulate milk production10. However, it is pertinent to consider the mother’s wellbeing first. Being a parent in hospital can be highly challenging and expressing milk can be mentally taxing. The first goal, therefore, should be to reduce stress and anxiety related to breastfeeding and proceed in a stepwise manner, supporting the mother throughout. Mothers should be encouraged to have high amounts of skin-to-skin time with their child — the more oxytocin production facilitated, the better milk demands will be. The mother should be encouraged to have appropriate fluid intake and foster a well-balanced diet, along with focusing on healthy sleep habits and mindfulness.
For the infant, continued propranolol therapy requires monitoring for potential side effects, including hypoglycaemia and bradycardia, which may impact feeding behaviours and growth. Newborns require up to 14–17 hours of sleep per day. In addition, it is well established that beta-blockers can impact mood and sleep behaviour, which for developing infants can result in delayed progress with feeding22.
As part of the multidisciplinary team, discussions on medicines management are crucial to treat the child’s underlying condition and encourage healthy overall development. In this case, a beta-blocker is the appropriate choice of medicine; however, with the known side effects of beta-blockers, pharmacists play a vital role in educating the family about medicines use, ensuring they understand the need to monitor for potential side effects. In addition, counselling points should focus on ensuring that beta-blockers are not given at inappropriate times to minimise side effects, such as sleep disruption. This can support adherence to the infant’s treatment plan, while addressing their lactation concerns.
Case 2: An unwell neonate requiring specific nutrition
A four-month-old infant with a history of Tetralogy of Fallot (TOF) was admitted at birth and underwent corrective cardiac surgery in the neonatal period. The post-operative course was complicated by prolonged admission in intensive care, followed by a period of being nil by mouth owing to NEC. This eventually required bowel rest and a prolonged course of antibiotics. The infant had completed antibiotic therapy and was clinically stable but required careful re-establishment of enteral feeding.
Owing to the infant’s complex cardiac condition, breastfeeding was contraindicated, as the exertion associated with breastfeeding could increase the work of breathing, which places undue strain on the cardiovascular system. Expressed breast milk was also not an option owing to a lack of milk supply and disengagement from the parents with the lactation worker.
Nutritional needs should be met through high-energy formula milk, which provides controlled calories and nutrient content to support growth and recovery. The dietician provided the appropriate formula milk for these needs and selected one that is compatible with administration via a nasogastric tube. This is the preferred method during this transitional phase, as it allows for precise delivery of nutrition without requiring significant effort from the infant.
As the ward pharmacist, a vital function is to support the use of any milk, which in this case is formula milk and the optimisation of its administration. Administering formula milk through a nasogastric tube can lead to acid reflux, especially if given via gravity feeding owing to the speed of the flow of the milk. Close monitoring of feeding tolerance is, therefore, essential. Vigilance is needed for signs of gastrointestinal intolerance or residual NEC, such as abdominal distension, vomiting or bloody stools.
At this stage in the infant’s development, avoiding excessive work of breathing is critical. Pharmacists should support strategies that reduce feeding-related energy expenditure, such as slow and continuous NG feeding, if necessary. Medicines, such as anti-reflux agents, should be evaluated for compatibility with feeding regimens, as they may influence nutritional management. In this patient’s case, the use of alginic acid sachets post-feeds may support the patient in tolerating the milk.
Multidisciplinary collaboration between pharmacists, dietitians and the healthcare team is vital to tailor feeding plans to the infant’s unique needs. Gradual advancement of enteral feeds under close clinical supervision ensures nutritional rehabilitation without compromising cardiorespiratory stability.
Summary
Infants with complex CHD require substantial support in feeding for adequate growth and development. Additionally, parents require supportive guidance and time to make the best decision for their child’s diet pattern and should be encouraged to think about long-term needs during hospital and following discharge home. Specific formulas offer critical support for sick or premature infants but cannot fully replicate the immunological and long-term health benefits of breast milk. Whether feeding is based on breastfeeding, formula milk, expressed breast milk or a combination of all three, each child should be considered individually, drawing on the best available evidence and the expertise of the full multidisciplinary team. There can be a tendency for healthcare professionals to focus only on the immediate health needs of the child, but it is equally important to provide support to new mothers postpartum. In doing so, a foundation will be established that will lead to better long-term outcomes for both the child and the mother.
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