COMPLEX HEALTH PROBLEMS
In all complex medical problems, health professionals should remember that breastfeeding/chestfeeding is not solely about nutrition, and that families may value partial breastfeeding/chestfeeding, and human milk feeding, even if supplementary feeds are necessary. Breastfeeding/chestfeeding is a source of comfort for parent and child, and is particularly useful for analgesia during painful procedures. Mothers talk about breastfeeding as a parenting tool in the hospital and also a sensitive sign of changes in the child's behaviour and condition. Babies who are mixed fed can receive infant formula while suckling at the breast/chest with a supplementary nursing system, or can combine bottle and breastfeeding/chestfeeding, or exclusively bottle feed with either expressed milk and formula.
While babies with complex medical problems may find breastfeeding/chestfeeding more difficult, they are also likely to have the most to gain from the immunological and neurocognitive effects of human milk feeding - for example in congenital heart disease. Breastmilk feeding in babies with congenital heart disease seems to be highly influenced by the culture of the managing medical team - who are often cited as barriers to breastfeeding.
Good lactation support and specific targeted projects can significantly increase breastfeeding in this context and high levels of breastmilk feeding can be achieved. Indeed, in one unit where "human milk is viewed as a medical intervention for hospitalized infants" and all mothers with congenital heart disease are intensively counselled by a lactation consultant, over 98% initiate lactation and most are discharged breastfeeding. The key to establishing a full milk supply is the same as for parents of preterm babies covered here. A similar protocol has been applied to babies with congenital surgical anomalies with 100% transition to direct breastfeeding, and to babies with congenital diaphragmatic hernia. It recommends 'non-nutritive' sucking at the breast as part of the transition process (expressing before the baby latches in order to drain the breast as much as possible).
Challenges of breastfeeding a sick child include lack of experience of medical staff with how to adapt typical advice - for example how to position a child with skeletal anomalies or medical paraphernalia attached to them. Medical staff may be unhappy with the lack of measurable intake for a fluid balance chart, or measureable calorie intake when weight gain is difficult. Things that parents may choose to do at home, such as bed-sharing, may be challenged in hospital. Breastfeeding a sick child can feel lonely and unsupported, making parents doubt themselves and feel guilty, either for wanting to stop or wanting to continue.
Hospital staff can take practical steps to improve the breastfeeding experience for sick children and their parents. This includes ensuring the parent has access to food, privacy, comfortable furniture and a breast pump (correctly sized). Staff can research breastfeeding solutions for challenges experienced, validate the parents motivation and achievement in breastmilk feeding.
There is an Academy of Breastfeeding Medicine guideline for breastfeeding babies and young children with Insulin-dependent Diabetes
There is an Academy of Breastfeeding Medicine guideline for breastfeeding babies with hypotonia (with particular focus on Downs' syndrome). In the UK, health professionals tend to believe that babies with Downs' syndrome can't breastfeed, are unskilled in maximising breastfeeding potential and undervalue retention of partial breastfeeding or breastmilk feeding, as summarised here. The organisation "Positive About Down Syndrome" has a special part of their website devoted to breastfeeding stories. La Leche League Canada have made a useful parent guide to breastfeeding in Downs Syndrome. Read one family's story here.
Metabolic disorders - The American Academy of Pediatrics advises that "alternating breastfeeding with special protein-free or modified formulas can be used in feeding infants with metabolic diseases other than galactosaemia, provided that appropriate blood monitoring is available". A case series reports success with a variety of metabolic disorders
Breastmilk is not equivalent to infant formula for fasting guidance before anaesthetic or sedation. The Academy of Breastfeeding Medicine recommends breastfeeding can continue until 4 hours prior to sedation, and can restart immediately after the infant or child is alert and haemodynamically stable. Some UK settings have reduced this to 3 hours - check your local guideline. Breastfeeding/chestfeeding mothers/parents of young babies may need to express milk due to the length of the fasting period, particularly if this is for a lengthy procedure.
There is an Academy of Breastfeeding Medicine guideline for breastfeeding babies with cleft lip and palate
Craniofacial or gut anomalies may prevent oral feeding. The key to establishing a full milk supply is the same as for parents of preterm babies covered here.
The voice of the breastfeeding/chestfeeding family
Have a look at Louise, Anna, Marie, Gemma, Sarah, Hannah & Zoe's stories on our site, or have a look at this beautiful video about breastfeeding children with life threatening illnesses, and qualitative papers on parents' experiences with breastfeeding sick children in hospital.