Special Needs

My new baby was born with special needs. Can I still breastfeed?

First, congratulations on the birth of your new special baby. Second, congratulations on making the choice to breast feed your new baby. How wonderful that you want to give your baby the gift of your milk. Babies with special needs experience special benefits from breastfeeding beyond the many advantages to typical newborns. Right now, you are probably struggling with conflicting feelings. Like most parents, you are joyful and excited to meet your new baby. At the same time, you may have feelings of disappointment, anger, helplessness, even guilt. Allow yourself time to process these feelings of grief, remember that your baby is a baby first and a baby with special needs second.

Babies born with Down syndrome, cleft lip or palate, cardiac problems, cystic fibrosis, a neurological impairment or other special needs will benefit from human milk even more than other babies. Human milk will boost your baby’s immune system, and is more easily digestible. It offers the perfect nutrition to keep your baby as healthy as possible, and be strong for any surgeries or treatments they may need. The special bond and breastfeeding hormones produced will help to keep you calmer and more in touch with your baby as well.

Often a baby with special needs is reluctant to take the breast; you and baby will need extra kinds of support while nursing. Let your medical team know that you are determined to breastfeed. Your partner, other family members and friends, your lactation consultant and your LLL Leader can back you up. If you want to give your milk to your baby, try to breastfeed right away. Be prepared to be patient, it may take a few weeks for your baby to learn how to properly latch on. If this isn’t working, start pumping as soon as possible after birth. You should pump as often as a baby would breastfeed, every two to three hours during each 24-hour period; setting an alarm will help keep you on schedule.  The pumped milk can be given by other feeding methods. It’s best to avoid bottles and pacifiers if possible, because suckling at the breast is different than sucking on a bottle and will help to avoid nipple confusion.

Ask your Leader or board-certified lactation consultant about getting an at-breast nursing supplementer system. These systems hold your milk in a small bottle or bag with a thin tube attached to carry the milk to your baby. The tube may be taped to your breast, so your baby can get extra milk while learning to breastfeed. Or you may tape the tube to a finger and let the baby suck on your finger to get milk. (Your finger is more similar to your nipple than a bottle nipple.) Some health care providers may be unfamiliar with this method. Tell them about why it is important to you and your baby. Keep trying to breastfeed, if at all possible. It’s been proven by research that breastfeeding is less stressful for babies than bottle feeding, but your health care team may not know this. Also, the cuddling and skin-to-skin contact involved in breastfeeding provides the stimulation your baby needs to fully develop his capabilities.

Oftentimes your doctor will want you to supplement a slow-gaining baby. See if your doctor will agree to have you use your own expressed breast milk or your hind milk. Hind milk is the milk in your breast at the end of a feeding, which has a higher fat/calorie content. To obtain hind milk you can express and give this by another feeding method if the baby is not sucking effectively.

In some cases, your baby with special needs may not become exclusively breastfed, and that’s okay. Rest assured that any amount of your milk received, by breast, pumped and given by bottle, or provided by another method (SNS, syringe, spoon, g-tube, Habermann Feeder) will greatly benefit your baby’s health and development. It’s something you alone can provide, which is good for your morale!

Breastfeeding your baby with Down syndrome:

Benefits to breastfeeding your baby with Down syndrome:

  • Breast milk provides extra protection against infections and bowel problems, which are more common in babies with Down syndrome.
  • The repetitive action during breastfeeding provides stimulation to strengthen your baby’s lips, tongue, and facial muscles; creating a building block for speech development. It will also improve mouth and tongue coordination giving your child a real developmental advantage.
  • Breastfeeding promotes closeness between mom and baby, creating a special bond. This will especially help in the grieving process that can be associated with a Down syndrome diagnosis.
  • Human milk is more easily digestible than formula and can help if your baby has digestive issues which is common in babies born with Down syndrome.
Tips to breastfeeding your baby with Down syndrome:

Extra patience and reasonable expectations are critical when breastfeeding a baby with Down syndrome. Low muscle tone, tongue thrusts, and a weak suck can affect the baby’s ability to breastfeed.

  • Babies born with Down syndrome are often more sleepy and placid. To make sure your baby gets the nutrients that she needs and establish your milk supply, it may be necessary to wake her every two hours for frequent feedings (at least 8-12 times per day). Make sure your baby is fully awake before feeding, you can do this with extra touch and stimulation throughout the feeding session. Also dimming the lights in the room helps to keep your baby’s eyes open, or you can try undressing your baby and using skin to skin contact to keep your baby alert and aware.
  • Switch nursing is very beneficial if your baby falls asleep at the breast. If your baby starts to lose interest in the breast, break the latch and offer the other breast. Keep repeating until he seems satisfied.
  • Pay extra attention to positioning your baby at your breast. Try to keep your baby’s body close to your body with chin and chest at breast level with his ear, shoulder and hip in a straight line and use extra pillows for support. See Positioning for more information.
  • If gulping and choking are a problem, try positioning your baby so that his head is higher than his bottom. The football and laid-back position can be helpful. See Positioning for more information.
  • Poor muscle tone may make it difficult for your baby to latch on well, including reduced muscle strength in their tongue and lips. It is very important to offer good head support during breast feeding. There are a variety of ways you can hold your baby to support his head, neck, and back. The Dancer hand position is especially beneficial to babies with low muscle tone. Hold your arm opposite the breast you’ll be offering. Using the hand on the same side as the breast you are offering, cup your breast with your thumb on one side of the breast, palm beneath, index finger pointing outward, and the other three fingers on the other side of the breast. Use your index finger to support your baby’s lower jaw while nursing. As your baby’s muscle tone improves through breastfeeding and maturity, he will become able to support himself and breastfeed more effectively
  • 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. Here is an exercise you can try to promote cupping of the tongue; 1) Place your index finger on the center of your baby’s tongue, encouraging the tongue to form the shape of a trough. 2) Push down on his tongue while gradually pulling your finger out of his mouth. 3) Repeat this exercise several times before latching your baby onto the breast.