Breastfeeding and Down syndrome

One in every 641 babies is born with Down syndrome, making it the world’s most common major genetic condition.

Nursing the baby with Down syndrome can be challenging, but with patience and persistence and as the baby grows in strength and muscle tone, breastfeeding often gets easier. In the meantime, both you and your baby can enjoy all the special advantages that breastfeeding has to offer. Some of those benefits include:

Protection from infection: Babies with Down Syndrome are especially prone to respiratory tract infections, ear infections, thyroid problems, and some types of childhood cancer. Breast milk contains live cells and antibodies that formula doesn’t contain, and has protective effects against all these infections. When a nursing mother is exposed to a virus, her body produces antibodies that help prevent her from the same infection again. Her breast then passes these specific antibodies to her baby in her breast milk, protecting him as well.

Fewer digestive problems: Due to decreased muscle tone in the GI tract, babies with Down syndrome often have digestive issues. Human milk is easier to digest than formula, and helps reduce digestive problems like constipation.

Lower incidence of allergies and skin problems: Children with Down syndrome often have more issues with their skin than the average child, like dry skin, eczema, seborrhea, and chelitis (scaly red patches of skin in the corners of the mouth). They are also more likely to have allergies and food sensitivity. Breast milk reduces the incidence of all these problems.

Improved oral development: Babies with Down syndrome have different oral structures such as flat palates and large tongues that may protrude. Both of these may cause problems attaching to the breast, posing breastfeeding challenges. Due to the unique sucking action required to breastfeed, babies experience mouth and tongue coordination improvement which promotes their speech and language development as they grow.

Increased neurodevelopment: Human milk has a fatty acid known as DHA that is not present in cow’s milk. This fatty acid has been shown to increase brain growth and development. Several studies have shown that children who were breastfed generally score up 8 points higher on IQ tests than their formula-fed peers. This increased brain stimulation is especially beneficial for the child with Down Syndrome.

Extra stimulation. The extra skin-to-skin contact that goes hand-in-hand with breastfeeding gives babies extra stimulation in order to more fully develop their capabilities.

Closeness between mother and baby. Nursing your baby with Down syndrome assures that you spend lots of time cuddling and giving skin to skin contact. Having an infant  with special needs often makes mothers feel powerless to help their babies, so breastfeeding or providing breast milk may help make mothers feel more empowered because they are doing something meaningful – something that only they can provide- to promote their baby’s health and well-being. If they aren’t able to put your baby directly to the breast, extra snuggling and body contact can also help provide the closeness he needs as he develops the mother and baby bond.

Enhanced mothering skills. The techniques you will use in the early weeks of breastfeeding to help your baby learn to nurse – the encouraging, the coaxing, and the teaching – are the same skills you will need over the years to help your child reach his potential. The hormone oxytocin that is released while breastfeeding (often referred to as the ‘mothering hormone’) helps nursing moms relax so they can be more ‘tuned’ in to their baby and more easily read his ‘feeding cues.’

Comfort in times of illness or stress: Babies with Down syndrome often have health issues such as heart defects, certain cancers, and vision problems. Dealing with these medical problems often means that they have to go through repeated medical examinations, treatments and even surgeries. Nursing provides comfort during painful procedures such as heel sticks, shots. Breastfeeding is also an ideal way to comfort your baby during times of stress or illness.

Babies with Down syndrome often have breastfeeding difficulties due to medical problems such as inability to coordinate sucking and swallowing, low muscle tone, or illness. They may need medical procedures or have health problems that involve separation of mothers and babies for periods of time.

Down syndrome can cause muscular conditions such as hypertonia ( causing rigidity and arching), or hypotonia (low muscle tone, resulting in floppiness and inability to stay attached to the breast).

If the baby doesn’t have an effective suck, he may tire more easily, resulting in not staying on the breast long enough to get the fatty hind milk and the extra calories they need to gain weight. Sleepy babies may need help in order to stay awake long enough to nurse effectively.

Problems with muscle tone often make feeding at the breast more difficult for babies with Down syndrome. You may have to experiment with different positions to find out which ones allow your baby to breastfeeding more effectively. Many mothers find that the motion of nursing in a rocking chair calms both them and their baby.

These muscular problems can cause problems when trying to get babies into a nursing position. There are also problems encountered that involve protruding, large tongues or flat palates, both of which can result in breastfeeding difficulties.

Babies with low muscle tone do best when they are supported by pillows so that their head and bottom are level. They may need chin support to help keep them from tiring and losing their latch.

Babies whose muscles are rigid tend to arch their body. Try to position them in a flexed position, back rounded with their knees bent. Sometimes swaddling with a blanket helps them maintain a flexed position.

Since breast milk intake can’t be measured, especially if your baby is nursing directly at your breast, learn how to tell if your baby is getting enough milk, Urine and stool output are signs of adequate milk intake, but weight gain is the best indicator and needs to be monitored carefully.

It’s important to know that even if your baby isn’t able to nurse at the breast, you can pump your milk and feed it to him by bottle, or alternative methods like supplemental tube feeding (SNS or Lactaid.) Human milk provides many important advantages that formula can’t provide, and any amount matters. Even if you combine breast milk and formula, your baby will receive benefits from breast milk.

Maintaining your milk supply by using a breast pump allows you feeding options. Some babies with Down syndrome are never able to nurse directly at the breast, and their moms end up exclusively pumping.

All breast pumps are not created equal. Mothers who pump frequently need a good double electric breast pump – ideally, a hospital grade pump.  Some insurance companies will cover the cost of hospital grade pumps if the child has a medical condition. The WIC program may provide a pump for mothers who have medical issues as well.  Under the ACA, (Affordable Care Act), most insurance providers are required to cover breast pumps for mothers with medical needs.

Be aware that your baby may need help breastfeeding. Explore your options for support before your baby arrives, to find out what services are available in your area.

An IBCLC (International Board Certified Lactation Consultant) will be familiar with how to help babies with Down syndrome breastfeed and can give you personalized advice.

Seek local encouragement and support from a La Leche League leader as you face the special challenges of nursing your baby. There are many resources providing support for families whose babies have Down syndrome. Listed below are just some that you may find helpful:

National Down Syndrome Society

International Down Syndrome Coalition

Happy Soul Project

Anne Smith, IBCLC
Breastfeeding Basics