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It’s an interesting question. Little is known about it. “Tube fed children” are not just tube fed. They were often born prematurely, had many stays in their hospital and their parents were just as affected and spent a lot of time in hospital to be with them. Therefore, since the birth of their tube fed child, the parents have had to depend on outside support for the care of the sibling or siblings. If a grandmother or an aunt/uncle provided support, then the sibling wasn’t so alone and could normally bridge the gap well. It is not so good when the parents are alone in a strange town without any support. The mother and father of both children share many tasks: job, hospital stays and they also want to give the healthy child a normal life. It is very often the case that the healthy sibling, whether older or younger, is expected to be considerate towards the sick tube fed child. The brave sibling is considerate, but only by suppressing their own needs.
In her 1979 book “The Drama of the Gifted Child”, Alice Miller presents a child that took the needs of adults into too much consideration. Or rather gave too much consideration. More consideration than was good for him. The child hardly thought of himself. This way of thinking remains in many situations throughout their life: the others come first, then you. Daily life becomes self-sacrificing, putting their own needs last becomes the rule and only when this person is seriously hurt, is he or she is able to defend themselves.
Of course this dynamic can also occur with the siblings of tube fed children. They have to respect their needs. This is easier said than done. The healthy child can’t be considered so much as the tube-dependent child. For the healthy sibling it is an especially difficult situation when the tube fed child comes home from hospital and the parents are responsible for additional care duties. Even with very good care through home-care nurses, for example for children on respirators at home, the mother is always preoccupied with the care of the tube fed child.
These experiences are well-known to us at NoTube. We work with many tube fed children, who also have multiple physical as well as mental problems or who need additional oxygen. Some of them have (several) siblings.
One such example is Anna. She and her family took part in a NoTube Eating School. Anna had an illness whereby just after birth food flowed into the chest cavity. After this Anna was almost completely paralyzed, although no cause could be determined. She was fed by tube, placed on a respirator and could only purposely move her arms a little. At the Eating School we met her sister. She was still a baby. She was funny, cheerful and had a happy disposition. During the Eating School we usually perform “home visits” and when we came into the family’s room, it appeared that Anna’s treatment was the central task for the parents. The father suctioned the tracheotomy. The mother measured Anna’s temperature, the CPAP machine was operated. The sister watched her iPad. It seemed that the parents were not interested in the sister nor could they enjoy her happy disposition. I notice that I, as a therapist for this family, barely remember the sister. This is just one example of many. It shows just how much the care and treatment of the tube fed child dominates everything. We know that it is not easy for the parents and at NoTube, a concept that includes the whole family is important to us. The tube fed child and its entire family are the center of the treatment. This means the siblings as well. For this reason, the siblings receive a certificate at the end of each Eating School. We know that these siblings are very important in the life of the tube fed child and we thank them for participating in the Eating School and for being a good role model.
Is it possible to change this situation that seems so fixed?
Yes, but with effort. The sick person will always either deliberately or unintentionally be at the forefront. Especially good and sensitive parents won’t want to or be able to deprive the sick person of their wishes and needs. Anyone who is sick in a family, changes the family. Children who have special needs do this more than others. The parents wish for a cure, or at least an improvement in the condition and the care required. For this reason the families come to us at NoTube. They want their child to be weaned from the feeding tube to oral food. This change often makes it possible for the healthy child to have a greater role in the family. For this reason we make use of the healthy siblings!
However you shouldn’t expect too much – the healthy child will always have to fight for a place next to the sick child. A consequence could be, especially when it comes to boys, that the healthy child shows “expansive behavioral problems”. The child behaves wildly, seems unconcentrated and sometimes, aggressive. The child “fights” for its parents‘ attention. This is an appeal – respect this and pay attention to the child for its abilities. The answer to this “fight” is not punishment and upbringing, but love and attention!
At NoTube we are happy when you share with us these worries that you may have in your family. Our multidisciplinary team can work out answers and rules of behavior with you that will help. Above all, it is about keeping the family together in difficult times and to share the burden together. Otherwise the stress can destroy families and that would be the greatest stress for the sibling and all family members.