My new baby was born with a disability. Can I still breastfeed?
If your baby was born with special challenges, 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 having feelings of disappointment, anger, helplessness, even guilt.
Babies born with Down syndrome, cleft lip or palate, cardiac problems, cystic fibrosis, or a neurological impairment need the benefits of human milk even more than other babies. The perfect nutrition and immunological benefits of human milk will keep your baby as healthy as possible, so they are better able to gain weight, and be strong for any surgeries or treatment they may need. Also, the special bond and breastfeeding hormones of the breastfeeding mother will help to keep you calmer and more in touch with your baby as a person first, a challenged baby second.
Human milk is easily digestible and better for the health of babies with heart problems or cystic fibrosis, who may have trouble gaining weight. It is less irritating to the nasal passages of a baby with a cleft palate than artificial milk (formula) is. Human milk will help protect the baby with Down Syndrome from the respiratory infections and bowel problems he or she may be prone to.
Often a challenged baby is reluctant to take the breast. If you are determined to make it work, let your medical team know. 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. 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. The milk can be given by naso-gastric tube or some other feeding method. It's best to avoid bottles and pacifiers, because your baby has to suck differently on a bottle and may become so nipple confused that it will be harder to get him to take the breast when he's ready.
Ask your Leader or board-certified lactation consultant about getting an at-breast nursing supplementer. Nursing supplementers 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 rubber bottle nipple is.) 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.
When you are ready to attempt breastfeeding, be prepared to be patient. It may take a few weeks for your baby to learn how to properly latch on. Again, seek the support of your LLL Leader or lactation consultant. A neurologically impaired baby, with too much or too little muscle tone, may need extra kinds of support while nursing. The cuddling and skin-to-skin contact involved in breastfeeding provides the stimulation your baby needs to fully develop his capabilities.
If your doctor wants you to supplement a slow-gaining baby, see if he will agree to using your hindmilk (the milk in your breast at the end of a feeding, which has a higher fat/calorie content). You can express and give this by another feeding method if the baby is not sucking effectively. A baby with cystic fibrosis or PKU may need extra digestive enzymes.
In some cases, the challenged baby may never become an avid breastfeeder. Rest assured that any amount of your milk, received at your breast, pumped and given by bottle, or provided by some other method (SNS, syringe, spoon, naso-gastric 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!
Resources for additional information
For more ideas about what to expect when breastfeeding and caring for your challenged baby, there are many sources of information, and support groups. Your LLL Leader will have a list in her BREASTFEEDING ANSWER BOOK.
Find a La Leche League Leader Near You.
These publications may be available from the LLLI Online Store or from LLL Group Libraries.
Give Us a Little Time, How Babies with a Cleft Lip or Cleft Palate Can Be Breastfed, by Herzog-Isler and Honigman, from Medela
Breastfeeding a Baby with Down Syndrome
Nursing a Baby with a Cleft Lip or Palate
Special Children, Challenged Parents, by Robert Naseef, PhD
There are also many articles listed in our NEW BEGINNINGS collection of articles on breastfeeding disabled babies.