Nasogastric tube

Question

Hello

Our 8-month-old son has a nasogastric tube since the age of 2 ½ months. Currently, he has a normal weight for his age, diversification is well, he eats normally and well tolerates a richer diet. He is not thirsty in the day as he has half a liter of milk during the night. Our CF Center does not want to stop the tube and even suggests me to keep a good time but with no more precision. We would stop it because it is a very invasive device for the baby, what's your opinion on this issue?

Answer

Hello,

Maintain good nutrition is essential in the context of cystic fibrosis to obtain normal growth, and a baby full of energy is more resistant to infections. A publication showed that CF children who have good nutritional status at 2 years have better respiratory status at 6 years. It is therefore essential to pay attention to the weight of the child in the first months of life, and provide nutritional support if the weight is not enough and if the enrichment of food is not enough.

Nutrition by nasogastric tube allows to give your baby the energy (calories) needed to grow normally. With it, he could probably regain normal weight for his size. However, this tube feedings brings him again about 500 Kcal per night, which represents more than half of its daily needs. A crash of that nutrition procedure certainly lead to a stagnation or even to a weight loss. It is best to keep the same amount of overnight feeding, and to phase out one night a week, then two nights a week, which will relieve stress leaving your baby without probe during the weekend for example. This should be done with the agreement of your CF center and under control of the course of the weight. The fact that your child eats better and better is a very encouraging element; it should thus continue diversifying and enriching, taking care to preserve the friendly atmosphere of the meals. Your baby will be able to gradually improve its food intake, until he no longer needs the tube feedings, which can take several months.

Sincerely,
Dr Michèle Gérardin

Nutrition in patients with cystic fibrosis: a European Consensus
M. Sinaasappel *, a M. Stern, J. Littlewood, S. Wolfe, G. Steinkamp, Harry G.M. Heijerman, E. Robberecht, G. Doring

14.01.2015