Feeding a special needs baby

There are a number of conditions that may affect a baby's ability to breastfeed. Many conditions may relate to neurological impairment, including central nervous system immaturity, pre and postnatal brain injury, Down’s syndrome, cerebral palsy and hydrocephalus, which are all associated with various feeding problems. In addition, feeding difficulties are observed in many babies born prematurely. Other conditions, such as congenital malformations, may also affect the baby's ability to feed, including cleft lip and/or palate, where the oral cavity is incompletely fused.

Signs

Signs of feeding complications

Common feeding complications as a result of neurological impairment include:

  • Hypotonia or ‘floppy infant syndrome', which may occur with or without muscle weakness and cause abnormal control of the oropharyngeal structures, resulting in weak or uncoordinated sucking
  • Weak sucking, swallowing and gagging reflexes
  • Lack of appropriate alertness and energy required for feeding
  • Dysphagia, especially in babies with cerebral palsy
  • Excessive hyperextension of the neck and shoulders, compromising tongue positioning and jaw movement
  • Respiratory illness, making breathing and swallowing more difficult
  • Slow weight gain
  • Further risk of breastfeeding complications and developmental delay

Common feeding complications as a result of cleft lip and/or palate include:

  • Babies with cleft-lip and/or palate are often unable to form a seal around the breast. In addition, since the oral cavity is not adequately separated from the nasal cavity during feeding, babies are unable to generate a vacuum to remove milk from the breast or bottle, or they experience significant difficulty with this
  • As a result, these babies experience fatigue during breastfeeding, prolonged breastfeeds, and impaired growth and nutrition
  • The size and location of the baby’s cleft lip and/or palate will influence whether or how they can breastfeed. There is evidence that breastfeeding can begin or recommence after cleft lip and cleft palate surgery
Evaluation

Evaluation of breastfeeding complications

  • Early evaluation of the special needs baby by a multidisciplinary team is required to assess the baby's feeding challenges and decide on an appropriate management strategy
  • Each special needs infant and their likelihood of breastfeeding success should be assessed. If breastfeeding is not possible, or exclusive breastfeeding is not possible, the mum can be supported so that she can achieve a full milk supply for breast milk feeding
  • Breastfeeding or breast milk feeding should be encouraged due to the health benefits for mum and baby
Management

Management

In conjunction with a comprehensive medical team and advice from a lactation professional, general evidence-based strategies that may be implemented include:

  • Skin-to-skin contact at birth: this has been shown to improve breastfeeding duration and should be encouraged
  • Where feeding at the breast is difficult or impossible or if mum-baby separation exists, regular breast expression should begin early after birth
  • Methods for establishing and maintaining a milk supply:
    • Removing milk early after birth is important. Pumping in the first hour after birth helps to remove more milk than pumping in the first six hours and increases milk production in the subsequent weeks
    • Expressing frequently is also important. Pump-dependent mums who express their milk more than six times a day have greater milk production than mums who pump less frequently. Pump-dependent mums are recommended to pump approximately eight to twelve times per day (24 hours).
    • If the baby has limited ability to suck, the mum will be at risk of low supply, so guidelines for increasing milk supply should be followed
  • A medical professional such as a speech therapist or occupational therapist may be required to help optimise feeding. If the baby is able to breastfeed. Methods that may help with breastfeeding include:
    • Support of chin, cheek and jaw movement may assist in facilitating a stronger sucking pattern if oral motor control is low or sucking is weak or disorganised
    • Modification of positioning and attachment may help breastfeeding. Different positions may help for any baby with cleft lip and/or palate or a special needs infant
  • If partially breastfeeding, the mum will be required to express regularly and supplement breast feeds via an alternative device
  • Supplementation of feeds may be necessary
  • Continual monitoring of nourishment and hydration, including volume, frequency of milk transfer and weight gain while establishing the feeding method is required
Study abstracts
Study abstracts
Human milk and breastfeeding outcomes in infants with congenital heart disease

Although human milk (HM) is the recommended form of infant nutrition, the provision of HM feeding among infants with congenital heart disease in the cardiac ...

Torowicz DL, Seelhorst A, Froh EB, Spatz DL (2015)

Breastfeed Med. 10:31-7
ABM clinical protocol #18: guidelines for breastfeeding infants with cleft lip, cleft palate, or cleft lip and palate, revised 2013

A central goal of the Academy of Breastfeeding Medicine is the development of clinical protocols for managing common medical problems that may impact breastfeeding success. ...

Reilly S, Reid J, Skeat J, Cahir P, Mei C, Bunik M; Academy of Breastfeeding Medicine (2013)

Breastfeed Med. 8(4):349-53
More information
Related products
More information
Physiological breast engorgement while breastfeeding

Physiological engorgement

Read more
Medela Advice: Mastitis while breastfeeding

Mastitis

Read more
References

American Academy of Pediatrics and The American College of Obstetricians and Gynecologists. Breastfeeding Handbook for Physicians 2006).

Lawrence, R.A. & Lawrence, R.M. Breastfeeding: a guide for the medical profession (Elsevier Mosby, Maryland Heights, MO, 2011).

Prime,D.K.et al. Simultaneous breast expression in breastfeeding women is more efficacious than sequential breast expression. Breastfeed Med 7, 442-447 (2012).

Morton, J., Hall, J.Y., Wong, R.J., Benitz, W.E. & Rhine, W.D. Combining hand techniques with electric pumping increases milk production in mothers of preterm infants. J Perinatol 29, 757-764 (2009).

Hill, P.D., Aldag, J.C., Chatterton RT. Initiation and frequency of pumping and milk production in mothers of non-nursing preterm infants. J Hum Lact. 2001;17(1):9-13

Hill, P.D., Aldag, J.C., Chatterton RT, Zinaman M. Comparison of Milk Output Between Mothers of Preterm and Term Infants: The First 6 Weeks After Birth. J Hum Lact. 2005 February 1, 2005;21(1):22-30.

Parker, L.A., Sullivan, S., Krueger, C. & Mueller, M. Association of timing of initiation of breastmilk expression on milk volume and timing of lactogenesis stage II among mothers of very low-birth-weight infants. Breastfeed Med (2015).

Meier, P.P., Engstrom, J.L., Janes, J.E., Jegier, B.J. & Loera, F. Breast pump suction patterns that mimic the human infant during breastfeeding: Greater milk output in less time spent pumping for breast pump-dependent mothers with premature infants. J Perinatol 32, 103-110 (2012).

Torowicz, D.L., Seelhorst, A., Froh, E.B., Spatz, D.L. Human milk and breastfeeding outcomes in infants with congenital heart disease. Breastfeed Med 10, 31-37(2015).

Reilly, S. et al. ABM clinical protocol #18: Guidelines for breastfeeding infants with cleft lip, cleft palate, or cleft lip and palate, revised 2013. Breastfeed Med 8, 349-353 (2013)

Thomas, J., Marinelli, K.A., & Hennessy, M. ABM clinical protocol #16: Breastfeeding the hypotonic infant. Breastfeed Med 2, 112-118 (2007).