NHD Paediatric Hub

A is a four-year-old child who has cerebral palsy. She has been exclusively tube-fed since birth and has never weaned. She has a complex background with prolonged hospital stays due to respiratory issues and issues around feed tolerance. She has been jejunally fed for around three years via a jejunal extension and her gastrostomy was used for aspiration for comfort. She has now progressed onto full gastric feeds of a standard whole protein 1.5kcal/ml feed, which she tolerates well.  A's parents are keen to consider BD, but are anxious given her background of feeding issues and poor tolerance.

Given A’s complex past, we feel it is important to discuss the family’s expectations. We meet with A's parents and explore why they believe BD would work for A. Both parents are very keen to be able to prepare meals for her and believe the psychological impact of feeding their child with homemade meals will be very positive. There is, however, huge anxiety as A has been tube-fed since birth; the family are unsure of the types of foods to use, the quantities required and potential allergies that certain foods can cause.

We discuss the reported benefits of BD from the research, such as reduced incidence of gastro-oesophageal reflux and improved stooling and some families being able to stop stool softeners. We discuss the strategies to introduce blends and, given A’s complex past, we agree this would be done slowly to ensure volume is tolerated. We advise the calorific value initially would be negligible and there would be no reduction in feeds. We discuss the concerns around potential allergies and agree we would introduce all foods to her diet. A's parents then commence BD by giving a small amount of fruit puree twice daily. They increase the amount over several weeks and then begin to introduce other meals.

Reflux remains problematic, with A having an increase in symptoms with certain foods, such as tomatoes, strawberries and some spices. We then discuss strategies to decrease the acidity of tomato sauces, as is making up a large component of her meals. This helps improve A's tolerance. We also discuss adding products such as yoghurt to spicier dishes to add tolerance.

BD has led to A having more formed stool, but whilst this has helped in terms of leakage of stool, she dislikes the feeling of passing stool and this has led to issues with with-holding stool. This has required a degree of support work to ensure she passes stool without issues. Stool softeners have been introduced and extra fluid administered. Whilst A's parents were initially keen for full BD, they feel now that they would prefer to continue with two meals per day until A’s stooling issues settle.

Whilst A has benefited from the wide variety of food in her BD,  the main benefit is for her family who are delighted to be able to make her meals and involve A in family mealtimes.(7)