Epidermolysis bullosa

Nutrition is essential for all human beings, especially during fast-growing phases like lactation, childhood, and adolescence. Babies without health issues allocate most of their nutrients to growth, but babies with EB have more fragile skin. As a result, they need to use a significant portion of the nutrients they ingest for other functions, such as: 

• Replacing nutrients lost through open wounds. 

• Using additional nutrient supplements to promote faster healing. 

• Reinforcing an immune system that constantly works against infections. 

• Ensuring proper intestinal function to prevent constipation. 

• Improving overall quality of life. 

In cases of EB, particularly the more severe forms, periods of malnutrition may be inevitable, especially when oral blisters are widespread. In these instances, eating can be particularly uncomfortable and painful, making it crucial to capitalize on moments when the baby can eat without trouble to compensate for days when adequate nutrition cannot be provided. Here are some helpful strategies: make a larger hole in the teat and hold it with your thumb and index fingers like a gripper; use your middle finger to gently press the milk, facilitating its flow without requiring the baby to suck. 

Maternal lactation is the most recommended feeding method by the World Health Organization during the first six months of life, with the possibility of being the exclusive method. Starting from six months the progressive introduction of other foods should start. In the cases in which maternal lactation is not possible, it will be starting 4 months that the introduction of other foods should be started. The natural progression is to begin with completely liquid foods and gradually add thicker textures until the baby can tolerate solid foods.  

In the case of babies with EB this process happens in a natural way as well but can be a bit delayed. Babies with EB can have more difficulties to swallow solid foods because of the presence of oral blisters and because of fear of chocking due to the new consistency. 

Lastly, during the process of weaning in babies with EB, it is crucial to monitor for gastroesophageal reflux as early as possible. The acidic effects on the oesophageal mucosa can be very harmful and painful. This is an important consideration to keep in mind.