Low muscle tone is a common characteristic of infants who have Down syndrome. "Babies with Down syndrome have even less neck and muscle control than most babies," says Amy Houtrow, M.D., Ph.D., M.P.H., a member of the American Academy of Pediatrics' (AAP) Executive Committee for the Council on Children with Disabilities. This floppiness, combined with a thicker, enlarged tongue, makes sucking and swallowing (in other words, eating) difficult. Feeding a baby with Down syndrome can be a challenge, but with a few tips and tricks -- and important knowledge about potential problems -- you can ensure that your little one gets the nutrition he needs to grow and thrive.
Breastfeeding is recommended for all babies, but it may be especially beneficial for those with Down syndrome. The antibodies in breast milk help build immunity (Down syndrome children have a higher risk of respiratory infections); plus, it's more easily digested (they're also more prone to bowel problems such as constipation). In addition, the physical process of breastfeeding strengthens a baby's jaw and facial muscles, which helps with speech and language development. Experts also believe that the skin-to-skin contact helps create neural connections that may bolster future learning. Dr. Houtrow, who is also medical director of Children's Hospital of Pittsburgh of the University of Pittsburgh Medical Center's Rehabilitation Institute, notes that many babies take a little time in the beginning to master proper latching while nursing. "But moms of babies with Down syndrome may need to work more closely with lactation consultants," she says.
Bottle-feeding poses many of the same latching and swallowing problems as nursing. You may need to try different bottle nipple types, including some that slow the flow of liquids, before finding one that works best for your infant. If your baby has a lot of difficulty swallowing, your doctor may suggest adding a thickening agent to his formula.
Feeding a Tired Baby
Approximately half of infants with Down syndrome also have a heart defect, and some of these babies need surgery to correct it. "Until the problem is corrected with surgery, some of these babies will tire more easily and lack energy to vigorously feed," Dr. Houtrow says. As a result, you may need to take breaks and arouse your infant several times during a breast- or bottle-feeding session to make sure he gets the nutrition his growing body needs.
When your baby is ready to try solid foods such as rice cereal or pureed fruits and vegetables, an adaptive feeding chair can help to support her head, neck, and body upright while you feed her. All babies are messy eaters when they first try solid foods; it's normal for them to spit out the food as they get familiar with the texture and taste and figure out the chewing and swallowing process. But because babies with Down syndrome have thicker tongues with low muscle tone, it may take them longer to learn how to coordinate the tongue and jaw movements necessary to consume solid foods. This means feeding times may go on for a while. If your baby starts to tire in the middle of a feeding, you may need to shorten the sessions and feed her more frequently (six to eight times a day) until more food is taken in than spit out.
Between 1 to 5 percent of people with Down syndrome also suffer from gastroesophageal reflux disorder (GERD). Reflux occurs when stomach contents travel backward into the esophagus. If your baby has reflux, he may arch his back and cry during feedings, and vomit forcefully. Your pediatrician may suggest slowing the flow of formula or breast milk from a bottle by adding a thickening agent like rice cereal. Try to burp your baby frequently during feedings and keep him upright for 30 minutes after he eats. In some instances, reflux medications may be prescribed.
Checking for Celiac Disease
Up to 16 percent of people with Down syndrome also have celiac disease, a condition that prevents the body from properly absorbing nutrients from barley, rye, and wheat products. Undiagnosed and untreated, it can lead to malnutrition and stunted growth. You can't always tell when a child has celiac disease, so the National Down Syndrome Society recommends that all children with Down syndrome get tested for it between the ages of 2 and 3.
You should always talk to your pediatrician any time you are concerned about your baby's nutritional needs and growth. A speech-language or occupational therapist can provide feeding therapy to help strengthen your baby's oral muscles and eating abilities. These services are provided free to babies with Down syndrome through the federally mandated Individuals with Disabilities Education Act (IDEA).
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