Nursing can be a frustrating experience for both baby and mother when it doesn’t go smoothly. For some newborns there are obstacles that must be overcome or mitigated before they can successfully breastfeed. It is important to have realistic expectations in order to not become discouraged and give up. It can take up to 4 or 5 months before some babies reach the turning point and are able to nurse without special support or guidance. The key to achieving a breastfeeding relationship is patience and persistence.
For a mother who wants to breastfeed, there are few things more emotionally difficult than not being able to get it to work. The ideas I am going to share with you come from some of my own painful experiences. My daughter was born with significant cardiac issues and spent the first four months of her life in the hospital. She was both bottle fed and fed through a nasogastric (ng) tube that went up her nose, down into her stomach. Later she was fed through a g-tube that was surgically placed in her stomach. Three times during her hospital stay she was not allowed milk via mouth or tube for days and lived on nothing but an I.V. bag for nutrition. But, despite all that, she learned to nurse, never quite perfectly, but well enough.
Feeding Snags
Lots of things can interfere with a baby’s ability to nurse. Perhaps your baby has a lack of strength and stamina due to a cardiac issue, or maybe her low tone is making it hard for her to get the hang of latching on and swallowing. If your baby is
in the NICU and you have been discharged from the hospital, it is even more difficult to establish a nursing relationship.
For whatever reason, if your baby can not breastfeed from the start, you will have to accept an alternate method of feeding as a backup. In most cases this will be the bottle, but for some it means an ng tube or a g-tube. Don’t stress that the secondary feeding method will ruin your baby’s ability to nurse. You’ll just have to work around it.
Mother’s Little Helpers
There are several things you can try to facilitate nursing. Me, I was so desperate that I tried them all. Some were very successful and others not so much for me and my baby, but that doesn’t mean they won’t work for you.
A Lactation Consult—As soon as you see that your baby is having trouble latching or swallowing, request a consult with the hospital’s lactation support person. Having a pro help you with positioning and such may be all you need to get things going.
Oral Stimulation—Give your baby some oral stimulation prior to trying to breastfeed. Make sure your hands and nails are scrubbed clean before touching your baby’s mouth. Stroke your baby from her mouth upward to her cheeks. Use a gentle downward stroke on the outside of your baby’s throat to encourage the swallowing reflex. Rub your baby’s gums, top and bottom, starting from the center and moving to the side and then back to the center. Stroke the corners of your baby’s mouth, once per side, in an arc starting from the top center and working down to the bottom center. Just before presenting your nipple, put your finger pad on your baby’s tongue and gently push it down from the roof of her mouth. When you feel her begin to cup her tongue to suck, quickly remove your finger and insert your nipple. This is easier said than done (trust me on this one) but it is worth a try.
The Dancer Hold—Whether breast or bottle feeding, you can use the Dancer Hold to support your baby’s cheeks and encourage latching and sucking. The Dancer Hold is a special hand placement that is complicated to describe but a lactation consultant can show you exactly what to do.
Positioning—A baby with
low tone needs to feel fully supported while she is trying to eat. You can do this by swaddling your baby although this might put her to sleep. You could also try different nursing positions as long as you are supporting your baby’s body from head to toe. My favorite position to accomplish this is side-to-side (though this is probably not something you can do in the NICU). I place my baby on her side on a slightly inclined pillow and lie next to her. This way she is fully supported and does not have the weight of the breast on her. She can also control the flow of milk easier from this position and I have free hands to help her if necessary.
Nipple Shield—A
nipple shield is a temporary solution designed to help train a baby with latch difficulties. You can use the shield over your nipple to make it sturdier, thus helping keep your baby’s tongue in position. Your baby will not lose the nipple if she is unable to secure or maintain a latch. These are not one size fits all and sizing is based on your baby’s mouth size not your nipple size.
SNS Feeder—The
Supplemental Nursing System made by
Medela can be used to teach your baby that milk comes from your breast if she is unable to get a good enough latch to cause you to let down. It is also helpful if your baby just doesn’t seem to know what to do at the breast. The hospital can provide you with the kit and show you how to use it. Basically you fill the bottle up with milk and then hang it upsidedown taped to your shirt or skin above your breast. There is a tiny tube that the milk flows through that goes into your baby’s mouth (along with your nipple). When your baby makes any attempt to suck (or even if she doesn’t) you can allow milk to flow into her mouth. The flow rate is adjustable and if your baby gets your milk to kick in, the feeder will let off on its flow accordingly. When I used this with my daughter she spat out my nipple and sucked the milk through the little tube like it was a straw.
Pumping—Sometimes the timing is all off when you go to nurse. Maybe you are so ready that you are leaking and your baby is overwhelmed by the flow. Maybe the milk isn’t there and your baby’s latch and suck is too weak or uncoordinated to get it going. In either case you can try pumping prior to nursing to resolve the problem. You can pump until the flood subsides or pump until you get a let down and then offer your baby the breast.
Ambience—There are a couple environmental things you can do to make nursing easier. First off, make sure you are comfortable because nursing a baby with low stamina or low tone can take a while. Have your boppy and a bunch of pillows handy, and a bottle of water for you. Turn the lights down but not off. Bright lighting will make your baby close her eyes and then it’s zzzz for her. The same thing will happen if it’s too dark. If your baby is too sleepy to eat you can try changing her diaper or massaging her to wake her back up. Also be careful to position your baby with her head up a little bit so that the milk will not back-flow into her ear canals. Make sure you burp your baby often since babies with eating difficulties tend to take in more air which can make your baby feel prematurely full and uncomfortable.
Protecting the Nursing Relationship
It is important to keep your baby aware of breastfeeding, or in other words, to protect the nursing relationship when you must use a secondary method of feeding. This means that you must make your baby associate filling her tummy with the smell, taste, and feel of the breast.
Bottle Feeding—Attempt to breastfeed your baby prior to bottle feeding her. Allow 5-10 minutes of practicing latching and swallowing. If your baby can’t get a good latch or a few good swigs after 5-10 minutes, you should try the bottle. You don’t want to frustrate your hungry baby or have your sleepyhead drift off again. Until your baby makes the connection between you and nursing, you should have someone else offer the bottle, if possible.
Tube Feeding—If your baby will be having a tube feed, position her as if she were breastfeeding with her face against the skin of your breast. This way she can practice nursing while her stomach is filling up. She will learn to associate feeling full with the breast. You can even do this if your baby is fluid-restricted and not allowed to feed directly from the breast. Just be ready to take her off if she does manage to get a good latch and starts drinking. (I know that seems mean, but remember her belly is filling up and she is learning how to use her mouth, so it isn’t as bad as it sounds!)
Continuous Tube Feed/I.V. Bag—If your baby is on a continuous tube feed or an I.V. bag, ask the doctor if every so often you can simulate the nursing experience by holding your baby in the nursing position, skin to skin, while offering her a pacifier dipped in breast milk, water, or even a couple drops of sucrose. This exercise will train your baby to continue to accept oral stimulation and to associate it with you/your breast.
Pumping
—The big thing you have to do to protect the nursing relationship is keep your milk supply up. Not so easy when nursing isn’t consistent. You and the pump might be spending a lot of time together. Most hospitals have super pumps but if you will be pumping at home you may want to consider buying or renting a really good electric pump. (Many insurance companies, including some medicaid plans, cover part of the pump rental fee if your baby is in the NICU.) There are two things you can do to make pumping easier. You can take pictures of your baby nursing (or pretending to nurse ;-) and put them in a little photo book that you can look at while you pump. This visual stimulation of seeing your baby nursing on you will encourage let downs while you are alone in the pumping room. Also, pumping right after you have practiced or simulated nursing with your baby will help you to get a good let down. Pumping on one side while you are nursing on the other is even better yet, but might be a bit tricky in a NICU or without someone’s help.
NICU NursingTrying to breastfeed your baby in the NICU can be tough. Make sure you let the doctors and nurses know that you want to breastfeed your baby and don’t let them discourage you. While the NICU staff will agree that breast milk is optimal they may seem like they prefer it coming from a bottle. They may be concerned about your baby’s efforts (energy expended) to nurse if she has a cardiac issue or they may just not be that experienced with breastfeeding babies with Down syndrome. They may insist that they need to keep track of the exact amount of milk your baby is ingesting. If this is the case, suggest that they weigh your baby before and after you breastfeed to determine the amount of milk your baby received. Do not be thwarted. Discuss a nursing plan with the doctors that will be medically safe for your baby.
When It Just Won’t Work
If you are unable to establish a breastfeeding relationship with your baby, remember that almost all the same benefits can be had by pumping your milk and feeding it to your baby via a bottle or tube. The bonding that occurs with breastfeeding can be developed by creating a special routine that is just between you and your baby. You could do baby massage, kangaroo care time (where you have your baby lie against you skin to skin), or a lullaby and snuggle time each day. The oral motor tone that is developed by breastfeeding can be worked on with oral stimulation techniques that your baby’s speech therapist can teach you.
Your Turn
If breastfeeding did not come easy for your baby, would you share your experience on what worked for you and how long it took your baby to get the hang of it?
Michael is a painter and illustrator. He works with watercolors, acrylics, and oils. Michael’s work is both expressive and lovely. On his website you can purchase original paintings, posters, note cards, or even commission a painting of your child inspired from a photo you provide. If you haven’t seen Michael’s work before, go visit his site. You will be impressed.
And you know what? Your child with Down syndrome is also gifted. Your role is to provide opportunity, to make room for that gift to grow. Someday your little Bob the Builder (ok, in this instance it's Brian the Builder) is going to grow up and contribute to the world around him in ways you can’t even guess today. 
There are some good picture card resources out there. For free on the web, you can download and print cards from the See and Learn Language and Reading program. I like these cards because they use children with Down syndrome as models, the images are very realistic, and access to the cards is free. However, you still have printing costs, laminating costs, and the colors on the cards blend together too much, which I think might make object differentiation hard.
You could also purchase premade packs of First Word card sets. There are several packages to choose from, the colors are good but the sets are pricey and not all of the pictures in each set will be useful with every baby. Do I really care if my baby learns what a car key is?
To get the perfect set of picture cards for your baby, you have to make your own. It is easy to do and you will end up with a set of cards that is realistic, durable (chew-proof!), and specific to your baby’s world. When you make your own cards using your baby’s spoon, bottle, books, family members, etc., your baby can immediately recognize the object. Using cards from other sources means your baby has to be able to generalize that the picture of a cup is a representation of his cup. When your baby sees a picture of himself reading one of his books, it makes more sense than seeing a picture of just a random book cover. 
Step 1. Take pictures of the objects your baby uses... his spoon and bowl, his bottle with milk in it, his cup, him reading his favorite book, you, his siblings, happy faces, sad faces, the family pet, toys, his crib... You can look at premade card sets to get ideas or jot down notes as you go through a couple days with your baby. 
What do you do when you don’t know what to do? Google the internet. Online I found an organic baby formula fortified with iron called Baby’s Only and developed by Nature’s One. I researched their nutritional information and found it to be comparable to the brands I had seen in the grocery store. It looked good but I still had questions... It said right on the can that it was a toddler formula and my son was just a 5 month old infant. And, what if after I spent the money on a can and shipping, I found out that it tasted as bad as the others? What if it caused the constipation I had been warned about?
Tube Feeding—If your baby will be having a tube feed, position her as if she were breastfeeding with her face against the skin of your breast. This way she can practice nursing while her stomach is filling up. She will learn to associate feeling full with the breast. You can even do this if your baby is fluid-restricted and not allowed to feed directly from the breast. Just be ready to take her off if she does manage to get a good latch and starts drinking. (I know that seems mean, but remember her belly is filling up and she is learning how to use her mouth, so it isn’t as bad as it sounds!)
