Card-AG - The Cardiologycal Working Group of the University Pediatric Clinic Münster

Lisa - probe diet or the misery with the tube in the face

Report of the parents

Introduction
Lisa was born too early. She was very vulnerable, very small and very ill. She spend the first three months of her life she was in hospital. But when she finally came home she actually was quite good.

1. It began quite harmlessly
Lisa had, as soon as she had felt better, drunk well and would still have drunk much more but because of her congenital heart diseaseshe was allowed to drink only a quantity: heart and lungs would otherwise collapse. She hadn`t really put weight on in the hospital but at home she did well. However, at the age of four months she no longer completely finished her bottle. She sucked and sucked, but she left more and more in the bottle. It didn`t make any difference which kind of food we offered. She declined to eat with spoons vehemently, she screamed herself blue at the attempt. When she got a urine way infection we came to the conclusion that, following the advice of our doctor to make her drink a lot, a gavage was possibly the best solution.

2. Bottle and gavage
At every meal she first got the bottle, everything she left she then got by the gavage. We thus managed to cure the urin way infection quite well and soon she was healthy again. Eating however didn`t get better again. The idea to give her many little meals also didn`t succeed. She seemed to have forgotten how to drink from a bottle at the age of six months.

3. No eating and please no feeding
When she was about nine months old she was no longer quite as well and her state of health deteriorated rapidly at the age of one year. She got ten little meals, all of them by gavage nevertheless she had vomit a lot. There wasn`t even the possibility to let her eat alone, she was too disgusted. Apart from her dummy she wouldn`t take anything into the mouth. She had hardly gained any weight during the last months and she stopped developing. Her stage of development was that of a four months old child.

4. What does your child have there ?
After an emergency-like, difficult heart operation shortly after her birthday she became better slowly. Her development increased little by little. There was no progress with respect to her eating. She had accepted some spoons full of food after the operation, however she no longer did so at home. It was even utopian to give her a hole meal by gavage, she would bring it out all up again. She got some food by gevage again and again during the hole day in shops, at home, in the street, in the car. She didn`t mind wether it was fruits, vegetables or mash, as long as it was in liquid form and as long as it was little.She was used to the tube in her face and did not even try to pull it out. For a whole year she had logopedic treatment with the success that I was allowed to brush her teeth and she swallowed the tooth paste every time.

5. I don't want to get tall
When Lisa was 1 ¾ years old the next heart operation was carried out. She was thrown back again in her development and it took quite some time before she was well again. For a long time Lisa then didn`t gain any weight. On the contrary she even lost weight and the food agreed less with her. At the age of two she weighed 8 kg. She could sit, stand up and even crawl a little already. She vomited a lot and the tube came out with it more often. It wasn`t difficult for me to place a new tube but over the time it became more painfull for me to carry out this unpleasant procedure.

6. How do we get rid of the tube again ?
At the age of 2 ¾ Lisa`s fourth heart operation was carried out. This time, we were released from the hospital quite soon but the recovery at home progressed only slowly. For three months she still needed intensive care she was finally well again. I was determined to make sure that she would get bigger again. I then wanted to finally get rid of this tube. Lisa didn`t gained any weight at all. However, something else happened. Suddenly she was interested in what we were putting into our mouth. She was really curious. At first she ate from my fingertip and after a couple of days she even took the spoon. Very rarely and very infrequently she got something to eat from the spoon, only when it happened that we were all sitting at the table together.

7. Sometimes the "hit jerk method" only helps
One day she vomited again and the tube came out. I was so fed up with feeding Lisa against her will and I was so disgusted with the tube that I finally told Lisa to eat or leave it. She ate little, very little and I didn`t dare to weigh her. She got something every two hours. Sometimes she ate quite well, sometimes with reluctance and sometimes only with cries and raging. I considered the advice which a logopedist gave to mi at that time really ridicaously. I should take care that Lisa didn`t lose the fun to eat. Which fun??? Some days she vomited once, some days she vomited more often, some days she didn`t vomit at all.

8. "Above without"
Three months later Lisa has gained 700 g. The first 700 g for a year. She eats vegetables, fruits, yoghurt but everything has to be mashed. She can already drink out of a cup, too. She begins to choke as soon as she gets crumbs into the mouth. She simply doesn`t know what to do with them. For some days, however, she has been curious about the crispy things we put into our mouth. She bites bravely into cookies and muesli bars. She will learn how to eat this things in time.