Breastfeeding a baby with Down syndrome can be difficult at times. When a baby is diagnosed with Down Syndrome, parents face many challenges. The illness requires round-the-clock care, which can exhaust family members. It comes with a high financial cost and stress. However, it also brings unspeakable joy and a sense of fulfillment. People have many opinions about the life of a child with Down Syndrome. What it means for the future is too difficult to predict and the conclusions differ depending on who you ask. But looking back on our experience, we can say that nothing at all was wasted in Andrea’s life.
How does breastfeeding help my baby?
Breast milk:
- is more nutritious and easier to digest than formula
- gives immune protection not found in formula
- lowers risk of infections
- helps minimize allergies
- helps the digestive system mature; protects against some bowel problems
- lowers risk of Sudden Infant Death Syndrome (SIDS)
- promotes eye and brain development
- is more economical than formula
When you breastfeed:
- you crate a special bond with your baby
- your baby’s mouth and tongue coordination improves, which will help speech skills
- you burn more calories than usual
- your uterus may shrink toward its pre-pregnancy size more quickly
For more details, see the education sheet “Breastfeeding.”
Are there special benefits for babies with Down syndrome?
Babies with Down syndrome have a higher risk of infection—and breast milk helps protect again infection more than formula does. Whenever a mother is exposed to a virus, her body makes antibodies that protect her from getting that infection again. She passes these antibodies on to her baby in her breast milk.
Because breast milk is easy to digest, stools are very soft and easy to pass. This may be helpful for infants who have bowel problems related to Down syndrome.
Infants with Down syndrome usually have low muscle tone. Breastfeeding offers extra stimulation through skin-to-skin contact.
What challenges could my baby have with breastfeeding?
- low muscle tone
- non-rhythmic suck
- arching of the body
- over-sensitive to stimulation
- weak reflexes for sucking, swallowing, and gagging
- may tire more easily and not nurse long enough to get the hind milk (which has the most calories)
How can I help my baby breastfeed?
Feed often: 8 or more times in 24 hours. You may need to wake your baby to feed. Look for mouth or hand movement even if the baby’s eyes are closed. This usually means the infant is in a lighter sleep and can wake up more easily. Other ways to wake the baby: undress for diaper change, or make skin-to-skin contact.
A baby with low muscle tone usually sucks better when the head and bottom are level, or close to it. Support your baby using pillows on your lap.
If the baby tends to arch the body, try to hold the body flexed, with knees bent and spine rounded. Swaddling in a blanket in a flexed position can help.
If your baby does not start sucking, express some breast milk onto the nipple by hand, or use a pump to get “let-down” started. This can encourage the infant to suck.
Once baby starts sucking, look for jaw, ear, and temple movement. If not seen, the infant’s suck is probably not as strong as it needs to be.
Sometimes the dancer-hand position (see picture below) can be used to support the infant’s chin.
Slide the hand under your breast forward, so you are supporting the breast with 3 fingers rather than 4. Form a U-shape with your thumb and forefinger to cradle your baby’s chin. This will help your baby press the nipple and areola between the gums.
If the infant has a non-rhythmic suck, try using a rocking chair, and offer extra chin support while breastfeeding.
Breastfeeding in calm surroundings with few distractions can help the infant who easily overreacts to stimulation.
A breast pump can boost your milk supply while you get started. Feel free to ask your health care provider or lactation specialist.
How will I know if my baby is getting enough milk?
Your baby should nurse every 2 or 3 hours (8 to 12 times in 24 hours), including some feedings during the night. Here are some things to watch for:
Watch for this pattern in your baby’s urine and stools during the first week after birth:
| Days after birth | Wet diapers (at least this many in 24 hrs) | Stool color | Number of stools (at least this many in 24 hrs) |
| 1st day | 1 | greenish-black | possible stool smears in first 24 hours |
| 2nd day | 2 | 1 to 2 stools | |
| 3rd day | 3 | stool turns yellower, softer, and seedier | 2 to 4 stools |
| 4th day | 4 | 3 to 5 stools | |
| 5th day | 5 | yellow, soft, seedy | 3 to 5 stools |
It can be overwhelming and difficult to learn that the child you are expecting or have just delivered has Down syndrome. You may experience conflicting feelings and have many questions. While breastfeeding may not be among the first things you think about, how you choose to feed your baby will be among the many important decisions you’ll make as a parent.
Children with Down syndrome often have physical characteristics that can make breastfeeding a challenge. However, with patience and perseverance, many babies with this condition learn to breastfeed successfully.
Benefits of Breastfeeding
Down syndrome (trisomy 21) is one of the most common congenital abnormalities, affecting about one in every 700 U.S. births. It occurs when a baby receives an extra copy of chromosome 21 during development. This extra chromosome affects the development of the baby’s brain and body, resulting in physical and mental challenges.
Breastfeeding offers many benefits to both babies and their breastfeeding parent, and babies with Down syndrome stand to benefit just as much or more than babies without the condition. Some of the positive effects of breastfeeding a child with Down syndrome include:
- Feelings of empowerment: When you have a child with a health issue, you may experience a sense of helplessness. Breastfeeding (or providing pumped breast milk if your baby is unable to breastfeed) provides the opportunity for a tangible contribution you can make to your child’s health, and for some parents, this can feel empowering.
- Improved digestion: Breast milk is more easily digestible than formula, making breast milk particularly helpful for babies with Down syndrome, who often have gastrointestinal (GI) issues.
- Improved immunity: Babies with Down syndrome may also have other health concerns, and they tend to be at higher risk of getting infections. Breast milk, with its protective antibodies and immune-boosting properties, can help prevent ear and respiratory infections.
- Physical contact: Breastfeeding brings you into close contact with your baby often during the day. The close connection and affection are good for your baby’s physical and emotional development.
- Reinforced bonding: Breastfeeding and the physical contact and bond it often supports can help you overcome any negative and confusing emotions you may experience as you navigate your child’s diagnosis.
- Strengthened facial muscles: Breastfeeding can also help children with Down syndrome develop coordination and gain strength in their facial muscles, which is important for speech development.
Benefits of Breastfeeding
Breastfeeding a baby with Down syndrome is not only possible, but
provides important benefits to both mother and child.
- Human milk will boost your baby’s immune system and protect
against numerous auto-immune disorders such as celiac disease,
asthma, and allergies. This is especially important for babies with
Down syndrome since they are prone to respiratory and viral
infections. - The repetitive sucking action during breastfeeding will strengthen
your baby’s lips, tongue, and face. This serves as a stepping stone
for future speech development. - Breastfeeding is convenient! It is always available and contains all
of the nutrients, calories, and fluids your baby needs. - Hormones produced during breastfeeding help your uterus to
shrink back to the size it was before pregnancy. - Breastfeeding has been shown to reduce the risk of developing
ovarian cancer and breast cancer. - Breastfeeding provides warmth and closeness. The physical
contact helps create a special bond between you and your baby.
Breastfeeding Your Baby
The early days of breastfeeding are a time for you and your baby to
get to know each other and learn to breastfeed effectively. Every
nursing couple must make some adjustments during this time because
every baby is unique. As you get acquainted with your baby, you will
discover that babies with Down syndrome have physical characteristics
that may have an impact on breastfeeding. While you probably will not
encounter all of the challenges discussed here, understanding your
baby’s particular needs will help you to get breastfeeding off to a good
start.
Positioning
Positioning your baby in a comfortable and supportive arrangement
will preserve her energy and allow her to use this energy for feeding.
Proper positioning will also help your baby get more milk for her
efforts and better stimulate your milk supply.
Use pillows as needed to support your baby’s body so her mouth is
level with or slightly below your nipple.
Always hold your baby very close into your body for comfort and
the best latch.
If your muscles feel strained, use pillows to help support your back,
shoulders and arms. When your baby is tucked right in against
your body, your arms aren’t working so hard. Remember to relax!
Your milk will flow best when you are calm and comfortable.
Latching on
Positioning your baby in a comfortable
and supportive arrangement will preserve
her energy and allow her to use this energy
for feeding. Proper positioning will also help
your baby get more milk for her efforts and better
stimulate your milk supply.
Expressing some milk onto your nipple prior to breastfeeding may
encourage your baby to latch on.
Ensure your baby gets a large mouthful of breast tissue. This will
help your baby draw the milk out and stimulate the breasts to
produce more.
To do so, hold her in a comfortable position, using your free
hand to support your breast in the C-hold – thumb on top,
fingers underneath – well behind the areola, the pigmented
area around your nipple. Tickle the baby’s lips lightly with
the nipple and wait for her to open her mouth very wide,
then pull her in close to your breast with the nipple pointing
up into her mouth. If it doesn’t quite work the first time, be
patient and try again.
Signs of Effective Breastfeeding
Perhaps the most obvious sign of effective breastfeeding is adequate
weight gain in your baby. This should not be solely relied on, however,
as babies with Down syndrome often gain weight at a slower rate than
traditional milestones suggest. You cannot actually see the milk going
into your baby, but here are things you can check for to ensure your
baby is nursing effectively:
The baby has taken a good-sized mouthful of breast, so that her
gums can compress the milk ducts that lie behind the nipple. The
nipple is drawn far back in her mouth as she sucks.
The baby’s chin is pressed into the breast and her nose is lightly
resting on the breast.
The baby’s tongue is cupped under the breast. You can see the
tongue by pulling down gently on the bottom lip. The tongue
should be visible between the breast and the baby’s gum.
The baby’s mouth has a secure seal on the breast. To release the
seal when taking your baby off of the breast, try slipping a clean
finger in the corner of his mouth, or press down gently on the
breast near his lips.
Typically, it takes one to two minutes of your baby on the breast
before let down occurs. During this time, the baby will suck rapidly,
pausing after every 3 or 4 sucks to swallow and breathe. After the
let down, sucking becomes slower and longer with a pause between
most sucks. Listen for sounds of swallowing coming from your baby,
approximately two to three seconds apart. Swallowing noises may be
subtle and difficult to hear. You may find it helpful to have a partner or
professional listen with a close ear the first few times you breastfeed.
You can also try placing a finger lightly under your baby’s chin – you
should feel a delicate, repetitive movement as she swallows.
Positions to Improve Milk Flow
If you find your baby seems to be drinking too quickly, position
your baby “up hill” so her throat and neck are higher than your
nipple. You can lean your body farther back by sitting in a rocking
chair or leaning on a supportive pillow, or have your baby sit up
in a straddle position on your lap. This position will help avoid
gulping and coughing, which may be a problem for some babies
with Down syndrome.
If your milk flows slowly or moderately, try starting your milk
flow prior to putting your baby to the breast. Gently massage
the underside of your breast to encourage your milk to let down.
Placing a warm, damp face cloth on your nipple may also promote
milk let down.
Sleepiness
Many babies with Down syndrome are very sleepy the first few
weeks after birth, which can hinder their feeding routine. To establish
your milk supply and ensure your baby gets enough milk, it may be
necessary to wake him to feed every two hours, or at least 8-12 times
a day. It may also be challenging to keep your baby awake for the
duration of the feeding. The hind milk, obtained in the latter part of the
feeding, is higher in fat and calories which are important for growth. It
is important that your baby receive these nutrients.
There are a variety of tips you may use to keep your baby awake during
breastfeeding:
Dim the room so your baby doesn’t have to close his eyes against
the light
Remove his clothes before breastfeeding to keep him cool and
aware
Stimulate his senses by lightly touching the edge of his outer
ear, stroking his arms, and talking to him during feeding. These
touches and sounds will distract him from becoming drowsy and
help him to focus on the task at hand
Try placing a cool, damp washcloth on your baby’s belly, leg, or
forehead. The cool sensation is bound to wake him up
Your baby can be encouraged to continue active suckling, and get
more milk, by using breast compression and/or switch nursing.
Breast compression is done when the baby is breastfeeding but sleepy
or not actively sucking. Use one hand to squeeze the breast firmly
but not so hard that it hurts. The baby should start to swallow. Keep
squeezing until the baby stops or slows down his sucking again. When
you release the pressure, the baby will increase swallowing; once it
slows down, squeeze again. Repeat the squeezing and releasing until it
no longer works, and then offer the baby the other breast.
To try switch nursing, watch for the baby to lose interest in active
suckling, then slip a finger in the corner of his mouth to break the
suction and offer the other breast; he should nurse more vigorously.
When his sucking slows again, switch him back. Keep repeating this
until he seems satisfied. You can combine breast compression and
switch nursing or do just one or the other. You will see what works
best for your baby.
Tongue Thrust
Babies with Down syndrome may have a protruding tongue that can
push against your nipple. This may pose a challenge for your baby
when latching on, as he may push the nipple out of his mouth. If your
baby is latched on properly, you should be able to see his tongue
cupped under the breast, resting on his lower gum.
When you are latching your baby onto the breast, watch for his mouth
to open wide, with his tongue forward and down. To encourage your
baby to bring his tongue forward, use your index finger to press down
softly on the baby’s chin while he latches on. This opening of the jaw
will cause the tongue to protrude further out of his mouth.
Don’t be disheartened if your baby needs some initial encouragement
to keep his tongue down while latching on. Facilitating oral stimulation
can help move the tongue into position to breastfeed. To do so, place
your index finger on the center of your baby’s tongue, encouraging
the tongue to form the shape of a trough. Push down on his tongue
while gradually pulling your finger out of his mouth. Try repeating this
exercise several times before latching your baby onto the breast.
Weight Gain & Supplementing
Four ounces a week is considered adequate weight gain, but it is not
unusual for a baby with Down syndrome to gain slowly even when she
is receiving enough nourishment. If she is not being given anything
but your milk, a baby who is getting enough to eat should have six
really wet diapers (more if using cloth diapers) and three to five bowel
movements a day (beginning after the fourth day). An older baby may
have bowel movements less frequently, but they should be plentiful.
A baby who is not nursing effectively or long enough may not be
getting the hind milk, the high-calorie milk that comes toward the
end of a feeding. Sometimes using breast compressions , massage or
switching sides twice during the feeding will help your baby to obtain
that higher calorie milk. If that doesn’t enhance the baby’s intake
and weight gain, you can offer this hind milk as a supplement after
your baby has finished nursing, to ensure she is receiving all of the
nutrients.
It is better to avoid giving supplements in a bottle until your baby has
been breastfeeding well for three to four weeks. While she is learning
how to breastfeed, exposure to artificial nipples and a different type
of milk flow may cause nipple confusion, since sucking at the breast is
different than sucking on a bottle.
If you choose to offer your milk as a supplement, there are a variety
of methods for you to choose from. If your baby can latch and needs
supplements of either expressed human milk or formula, you can use
a nursing supplementer or other method that avoids artificial nipples.
The nursing supplementer is a small soft tube that rests on the breast
like an “outer” milk duct. This method is helpful because the baby
suckles at the breast while receiving the extra flow of milk from the
small tube.
Bottles are difficult to avoid if the baby is unable to maintain an
effective suckle at the breast. The need for bottles may diminish
as your baby matures and his muscle tone improves and some
mothers have found ways to bottle-feed in a manner that supports
breastfeeding.
One size does not fit all; your family physician or lactation consultant
will be able to offer you guidance on what techniques will work for you
and your baby.
During the time that your baby is learning to breastfeed effectively,
you may need to offer supplements after most feedings. Some babies
nurse better if they get some of the supplement before they are put to
the breast, rather than waiting until they are upset with hunger.
Support for Breastfeeding
All babies benefit from breastfeeding or receiving breast milk.
Sometimes, information, support and encouragement are all that is
needed to get over the challenge; sometimes, practical interventions
are required; and other times, breastfeeding just doesn’t work out.
Support and information can be found at LLLC meetings or from
LLLC Leaders. Lactation Consultants can assist with supplemental
nursing devices and pumps. Your health nurse or doctor can provide
information on other feeding options. Remember your baby thrives on
your love as well as any nourishment that you give him.