Babies with EB require calories sufficient for growth and development as well as for wound healing. Infants with blisters and lesions in their mouths may have difficulty latching on and sucking. Because nutrition in these babies is so important, expressed breast milk often is provided rather than actual breast feeding. If the mother decides to breast feed, the baby's weight must be monitored, and a plan to switch to pumping and bottle feeding is essential should the baby fail to gain weight. Practitioners should help the mother understand that most babies with EB do not breast feed successfully, and that bonding will occur if she holds and cuddles the baby during feedings.
Many babies with EB have difficulty sucking from a standard nipple. Cleft palate nipples, such as the SpecialNeeds® Feeder (known in the past as the Haberman Feeder) or the Pigeon Feeder incorporate a valve that facilitates delivery of the formula without the need for vigorous sucking. Using a cleft palate feeder, milk may even be squeezed into the baby’s mouth if sucking is traumatic.
Infant mouth care may include gentle cleansing with a spongy toothette. Often, the blister roof in the oral mucosa appears white, and a pediatrician may mistake it for thrush. Most babies are vigorous eaters, even with blisters in their mouths. As long as the baby is eating well, the blisters should be left alone, and the baby will drain them simply by smacking and eating.
If weight gain lags or ceases, or if the baby does not begin to gain after a brief period of weight loss (usually occurs within the first week of life), a pediatric registered dietitian should be consulted. There are many strategies that will help the child gain weight, including fortifying breast milk or formula, providing higher-calorie formula or providing formula that is easier for the baby to digest. The dietitian should work with the pediatrician to develop a plan. At the very least, weekly weight checks should be conducted for an infant who is not on an upward growth curve.
Some babies with EB require gastrostomy feeding tubes if they are unable to take in sufficient calories by mouth, which is determined by tracking the child’s height and weight on a growth chart. The pediatrician will keep these charts as part of the baby’s medical record, but it is helpful for parents to track the weight, as well. Parents should be aware of where on the growth chart the baby’s height and weight are plotted and should seek support if the baby is approaching the 10th percentile (or lower).