Breastfeeding When Your Baby Has Hypotonia,
Congenital Heart Disease or Down Syndrome
Babies with special needs are often bombarded with a variety of health problems early on. Those babies who have Down syndrome often face respiratory tract infections and bowel problems. They can benefit from the gentle protection human milk provides. Breastfeeding also helps establish a bond in the midst of the strong emotions and high stress surrounding the birth of a child who has special needs.
Nursing TechniquesHypotonia (low muscle tone) is common among babies born with Down syndrome, as well as other babies who are born with special needs. Hypotonia may make breastfeeding difficult, but with practice these babies gradually improve mouth and tongue coordination as well as muscle tone. This improves speech and language development later in life.
The child who has Down syndrome and/or hypotonia may have instability in the neck joints. Therefore, the baby should be well supported and nursed in an upright position, supported by lots of pillows. This will also help with gulping and choking. The baby may also need to be burped every five minutes or so during a feeding.
Weight Gain/Heart DefectsBabies with Down syndrome are often born with physical abnormalities, such as congenital heart disease, and require extra energy just to maintain adequate circulation. These babies must be closely watched for adequate weight gain. Keeping track of wet diapers is an easy way to monitor weight gain: a healthy baby should have six to eight wet cloth diapers or five to six wet disposable diapers a day. Frequent bowel movements, two to five a day, for the first six weeks, indicate that the baby is getting enough to eat.
According to Combs and Marion (Pediatric Nursing Mar.-Apr., 1993), children with congenital heart disease who received any amount of mother’s milk, even if it was supplemented with formula, had shorter hospital stays and gained weight more easily than babies who were exclusively formula-fed. The other plus is that breastfeeding is compatible with all heart medications. Once the baby’s condition is stabilized with medications, he or she will be more enthusiastic about nursing and will generally not require supplementation.
However, if the baby is not showing signs of adequate weight gain, it may be necessary to give supplemental feedings. Supplements are often necessary for babies who have heart disease due to the excess of energy they use. The mother can pump her own milk for these supplements so that the baby continues to receive the benefits of mother’s milk.
If weight gain continues to be low despite frequent nursing and supplementing, make sure the baby is fully awake and actively sucking during nursing. A baby who is very sleepy must be stimulated to receive all the milk he or she needs. Short, frequent feedings throughout the day and tactile stimulation, such as hugs and playing a game like patty-cake may help.
The Benefits Last a LifetimeThe bond established during breast-feeding reassures the new mother that she is able to help her child mature into a strong and capable individual. “Breastfeeding has made it easier to parent a child with Down syndrome,” says one mother. “Not only has it helped Aaron physically and emotionally, it has made life more pleasant for me. I love to hold and nurse him, and he thrives on this bonding contact. We have not had the stress of illness, since human milk has kept Aaron so healthy. His oral development is very good, since breastfeeding is the best exercise there is!” Source: La Leche League International
Reprinted with the express consent and approval of Exceptional Parent, a monthly magazine for parents and families of children with disabilities and special health care needs. Subscription cost is $36 per year for 12 issues. Call (877) 372-7368.