A good nutritional status is important to achieve a successful outcome in short bowel syndrome. The goals of nutritional management are to maintain normal growth, promote bowel adaptation and avoid complications.

Babies with short bowel syndrome are dependent on parenteral nutrition generally from birth. The babies that are going through the intestinal rehabilitation programme will require parenteral nutrition as their main source of nutrition until and after the lengthening surgery, others require it until enteral feeds can be increased, tolerated and are growing well. Previously the parenteral nutrition has had to be lower in fat to help preserve the liver however due to recent advances in parenteral nutrition this can now be near or equal to normal fat requirements.

Your child will also be encouraged to orally feed with either expressed breast milk or a hydrolysed formula as demand feeds to stimulate and teach the brain and bowel. During this period while on parenteral nutrition, your child may not always be hungry to feed. 

This improves as the parenteral nutrition becomes more overnight and over a less number of hours. 

Babies tend to orally feed better on the ward when parents are with them as the nursing staff cannot always feed the baby on demand. It is often implied that your child may not like the hydrolysed formula however this is generally not the case as they just need lots of consistent encouragement to feed. It is hoped that your child will not require any form of tube to help with feeding but this is sometimes used for top ups if there is total oral aversion.

After lengthening surgery your child will restart parenteral nutrition and a few days later will restart enteral feeds. This will be again using either expressed breast milk or a hydrolysed formula as small feeds initially. If these are not tolerated, other formulas may need to be used such as an elemental feed or a modular feed. Weaning will also recommence.

Oral feeds with or without surgery will be gradually increased in volume and frequency as tolerated. The feed concentration will also be increased gradually as tolerated to achieve additional calories to help your child grow well.

Weaning will start as usual at approximately 6 months of age, even if waiting for surgery. At this time it will be basic weaning foods of negligible nutrient content consisting of smooth, bland, non-wheat cereals (baby rice) and pureed cooked vegetables and fruit. This will be increased as tolerated aiming 2 – 3 times per day. It is very important to start weaning at the appropriate age as if the ‘window of opportunity’ for food acceptance is missed, it could result in an increased risk of developing feeding difficulties. Also this is always a good time to incorporate messy play so your child does not become averse to food being on their face or hands and helps prevent feeding difficulties.

Weaning should continue to progress with a restricted diet free from wheat, gluten, milk, egg and soya. This should increase in variety and amount and advance to soft lumps, mashed consistencies and finger foods. Chicken, meat and fish (iron-rich foods) are then introduced gradually as tolerated. Within a few months this should move towards increased textures consisting of chopped family foods with three meals per day plus snacks within normal family meals. You should encourage your child to self feed as soon as they show an interest.

Due to the restrictions of the diet there are many staple foods available free from gluten and wheat which your GP may prescribe for you or you can buy from large supermarkets. These include bread, pasta, biscuits and flour. There is also a wide variety of commercially available foods which are free from milk such as butter and cheese.

As your child’s oral diet increases and feed tolerance improves the parenteral nutrition will be reduced accordingly and hopefully eventually discontinued. The enteral feed will also continue as required aiming to reduce and then in time stop or be replaced by either alternative milk free milks or cow’s milk when weight gain is adequate with a well tolerated oral diet.

As time goes on and the bowel adapts to a restricted diet, new foods will be introduced gradually one at a time. Food groups are generally reintroduced with wheat/gluten first and increasing the amounts as tolerated, moving on to soya, egg and finally cow’s milk. Tolerance is monitored by absorption meaning frequency and consistency of your child’s stools and how well your child grows. It can take weeks to months to a few years for the reintroduction of foods to be completed successfully.

If for any reason stools are not improving, with or without medication then it may be suggested your child take a probiotic which has shown in some instances to reduce the number of stools and improve stool texture.

It would be hoped that in time your child will manage a normal family diet and continue to grow well.