Babies unable to feed orally or demanding one or two hourly feeds may need tube feeding even temporarily to gain weight and prevent the parents becoming too exhausted to cope. The three types of tube feeding are:
OG - tube in the mouth and down the oesophagus
NG - tube in the nose and down the oesophagus
Gastrostomy - tube inserted in a small opening through the skin directly into the stomach
Although nursing experience is helpful, parents without any medical knowledge can learn to tube feed at home and they quickly become the experts on tube feeding their baby. Continuous overnight feeding by mechanical pump or naso-duodenal (i.e. to beyond the stomach) tube may be tried where ordinary methods of feeding have failed. A period of time is required for evaluation before a gastrostomy is considered or where surgery is not advisable.
- The SOFT USA factsheet on common problems of infants with T13/18 includes information on tube feeding.
- The Scottish CEN (Children With Exceptional Healthcare Needs) Network has produced a DVD capturing some of the emotions felt by parents of tube fed children - "How Does It Feel?" (watch it online).
- The Feeding Tube Awareness Foundation (USA) produces an excellent guide for parents.
- The Oley Foundation has written a Tube Feeding Troubleshooting Guide with a dedicated section for those new to tube feeding.
- Every February, Complex Child Magazine devotes an edition to feeding tubes and gastrointestinal conditions.
Tube Feeding of Solid Foods
As a child grows their nutritional needs may change. Some older children are fed blended solid food through their feeding tube.
- Complex Child magazine has information on tube feeding, including the experiences of families trying a "blended diet".
The following personal account of tube feeding was written by a mother in her early twenties who had no previous medical experience, and whose daughter had trisomy 13 and needed to be tube fed:
'My daughter Ashlee was tube fed. My first thought was of horror, "I can't do that" but realising this was the only way l could take her home and that nervousness and hesitancy would only prolong her stay in hospital, I made myself think there was nothing to it. After midwives helped me to tube feed her and explained what to do I sailed through her other feeds until I got her home. Then came the difficulties and I discovered how to manage by experience.
Before each feed I washed my hands and prepared everything I needed. I turned my baby on her side to prevent her choking if she was sick, and propped her up slightly with a pillow. Putting the tube in the side of the mouth reduced retching, and to make sure the tube was in her stomach I always did a litmus test. If she became distressed when the tube went in I stroked her face to reassure her before starting the feed. An unsettled baby causes much frustration. If she didn't want her feed I removed the tube and tried again later.Tilting the stopper and pushing it gently into the syringe ensured the milk didn't gush into her stomach which would have startled her into bringing it up again.
If she strained during a feed the same thing happened, and I had to be quick and put the stopper back in the syringe to hold the milk in place before it drenched both of us. I never removed the tube while milk was being administered, but nipped it close to the mouth to suspend the milk, and repeated this procedure when she had finished feeding, always remembering the baby must not sit up when the tube is in. Eventually I was so experienced I could cuddle her as she was tube fed. The Special Care Unit gave us an emergency advice line to phone if we ever needed help or advice, and also provided tubes and mucus extractors. As my daughter grew, her feeds increased and I needed to use larger syringes'.