Breastfeeding is a demanding workout for your baby. Every time she feeds, 40 muscles in her lips, tongue, jaw and cheeks, as well as six cranial nerves,1 work together to control and coordinate sucking, swallowing and breathing.
If your baby has a congenital disorder, disability or illness that affects any of these muscles or nerves, she may not be physically able to breastfeed. Or she might feed but struggle to take in enough milk. But this doesn’t mean she won’t be able to benefit from all the goodness of your breast milk. In fact, its protective and health-giving properties may be even more important if your baby has special needs.
“Breast milk contains lots of immunological, anti-inflammatory and growth factors and live cells,” explains Dr Katsumi Mizuno, Professor of Paediatric Internal Medicine at Showa University’s Koto Toyosu Hospital. “It’s important to give breast milk to a baby with special needs to prevent infectious disease and provide optimal nutrition.
“Babies with congenital and neurological conditions may be more likely to suffer from respiratory2,3 and ear infections4 and gastrointestinal illnesses,5 and are more likely to need surgery. Your breast milk is effective in preventing infections and promoting healing,”6 says Dr Mizuno.
Reasons your baby might have difficulty breastfeeding
Cleft lip and/or cleft palate
A baby with a cleft lip may not be able to form a seal around your breast during feeding, although a lactation consultant or breastfeeding specialist can teach you techniques that may help. Often, those with cleft palates are unlikely to create the suction required for breastfeeding.7
Premature birth
If your baby was born early, she may not yet have the muscle strength and coordination required to breastfeed efficiently. Read more about giving breast milk to your premature baby.
Down’s syndrome and other trisomy disorders
Babies with Down’s syndrome may lack the muscle tone and the mouth and tongue coordination needed to feed effectively from the breast.8 Other trisomy disorders, such as Edwards’ syndrome and Patau syndrome, also tend to cause complex feeding difficulties.
Neurological disorders
Neurological disorders (diseases of the brain, spine or nerves) often cause hypotonia – the medical name for reduced muscle tone. Cerebral palsy,9hydrocephalus, birth asphyxia, spina bifida, neonatal stroke, brain malformations and hypoxic ischemic encephalopathy can all cause feeding difficulties.
Pierre Robin syndrome
This causes a much smaller lower jaw, often in combination with a cleft palate and tongue that falls to the back of the mouth, which makes breastfeeding almost impossible.10
Oral surgery
Surgery on your baby’s mouth, tongue or jaw may make breastfeeding painful or uncomfortable for her for a while.
Expressing breast milk for a baby with special needs
The first step is to initiate your milk supply so you have enough for your baby, however she’s able to feed. If your baby can’t breastfeed straight away, it’s important to collect as much of your milk as you can by expressing frequently. Initiating and building your milk supply from early on will help ensure you have plenty of milk to feed your baby, now and in the future.
Double pumping around eight times every 24 hours is recommended, as this gives the best chance of building a good milk supply.11 Ask a lactation consultant or breastfeeding specialist for support and advice.
“For the first few months, my life revolved around pumping. I would set alarms at night – every three hours I would get up and pump,” recalls Catherine, mum of two, New Zealand. “Because of his cleft palate, Michael couldn’t suck, so we used a special squeezy bottle. I had to keep my eyes on him all the time when he fed, because if I looked away he might have choked or I wouldn’t have seen milk come out of his nose, which made him upset.
“Joining online support groups for mums who pump exclusively really helped me. I managed to continue pumping his feeds for seven months – a real labour of love!”
Ways to give your baby breast milk
Some babies may need to be fed a different way at first, until they can learn to breastfeed or bottle-feed. A feeding tube can be used to gently feed milk directly into your baby’s stomach. The tube may be placed in her nose or her mouth by the healthcare professionals looking after her. Once she’s able to feed another way, the tube will be removed.
If your baby can swallow but not breastfeed, you might be advised to try alternative ways of feeding. “Methods, such as finger-feeding, where the baby takes milk from a feeding tube or silicone finger feeder on the parent’s finger, can be effective for infants with a neurological impairment. Or a special needs feeder may be easier for the baby,” explains Dr Mizuno. “It really depends on the infant. Other babies might prefer cup-feeding.”
“Cup-feeding is often the preferred and safest method when breastfeeding isn’t possible,” Dr Mizuno continues. “It may lead to you breastfeeding for longer after discharge, although you may have to stay somewhat longer in hospital to start with. A significant amount of milk can be spilled during cup-feeding,12 so any spillages need to be measured if the intake of milk is regulated precisely.”
Sarah, mum of three, UK, shares her experience: “Our eldest daughter has complex needs, including cerebral palsy. She fed well from the breast at first, but on day three she became seriously ill, and from then until two months she was fed expressed breast milk via a nasogastric tube. While she was in hospital I expressed every three hours.”
Sarah’s story had a positive outcome: “At about eight weeks old, when her health was more stable, we reintroduced direct breastfeeding with the support of a specialist and she picked it back up easily. By 12 weeks, when we took her home, she was solely feeding from the breast.
“When so many people were involved in the care of our baby, expressing milk made me feel like I had a purpose and special role, and that helped me to keep going at an incredibly difficult time.”
If your baby is able to latch
If your special needs baby is physiologically able to latch, keep offering your breast regularly in addition to any other feeding methods. Even if she doesn’t actually take milk from the breast, this sort of ‘non-nutritive sucking’ can comfort and settle your baby and help her feel safe, warm and loved. It also allows her to practise sucking, which may make transitioning to exclusive breastfeeding easier later on.
If she’s able to take some milk from the breast but can’t meet all her nutritional needs that way, speak to healthcare professionals about how much expressed milk she needs and the best way to feed it to her. A supplemental nursing system is a way of giving your baby expressed milk as she breastfeeds, or try one of the devices mentioned above.
If your baby is recovering from oral surgery – for example on a cleft lip or palate – she may find breastfeeding uncomfortable for a while. Offer the breast in addition to other feeding methods, as even non-nutritive sucking has a soothing effect and studies suggest it may help babies deal with pain.13
“I was told by lots of people that my son wouldn’t be able to breastfeed with a cleft lip. In fact he fed well, but his latch hurt my nipples,” remembers Nicola, mum of three, UK. “After his surgery he was sore at first, but it quickly settled down. There was a big change in his latch, and it took us both a little while to get used to it, but he was soon breastfeeding well again and we kept going until he was a year old.”
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13 Harrison D et al. Breastfeeding for procedural pain in infants beyond the neonatal period. Cochrane Database of Syst Rev. 2014;10:CD11248
