choose the most suitable tube weaning program fro your child

7 reasons to free your child

8 reasons parents continue to tube feed their children

Subscribe today

to get our latest articles and e-books right to your inbox:

All men are born premature. Even if children are born on time they need nurturing, care and love. They need adults in order to survive. They can’t walk after birth like a newborn horse; they can’t crawl like ants and they can’t swim instantly like fish. They need adults. This is the price evolution took in building such a complex organism as a human being.

40 years ago, the World Health Organization defined babies as preterms when they weighed below 2400 grams or were delivered before the 34th week of pregnancy. Children who fell outside of these parameters were not considered to be viable, and life saving treatment was, therefore, deemed unwarranted. Medicine has made great strides in its development since then. Today, survival is not uncommon for children under 500 grams and bordering the 23 and 24 weeks of gestation. The 24th gestational week more or less constitutes the border between life and death today. This may change in the near future.

At scientific conferences, ethical discussions arise as to whether the potential outcomes for the children, after months in ICU, is sufficient when also taking the hardships for the child and the parents into account. Furthermore, mankind now has 8 billion members and, as healthy children die due to malnutrition in many countries, the enormously costly treatment of very early born children is under surveillance.

We do not advocate these standpoints. First of all, one cannot say in advance whether “Franz” or “Amalie” will become a healthy child or not. Moreover, medical treatment can only be delivered where it is available. While it is, of course, regrettable and distressing that all people do not have equal access to health services and social support systems, that is a poor reason not to administer it when we are in a position to do so. A hip-replacement for an elderly patient is a “luxury” afforded only in so-called developed countries, but is, nevertheless, paid for by their health plans. Finally, the value of life is not assessable in these terms. No one can say which life is worth living and which not. Nobody requested their life and, therefore, nobody is in a position to end one voluntarily. The care of preterm and full term children is different, but not fundamentally. While the extremely preterm will require more medical attention, they all are fully dependent on the adults in their life for survival.

Dr. Ewald Ritschl drew on the knowledge of his 40 years of work in neonatology to give voice to some questions for the children who are born full term as well: Is it okay to want to learn? Is this an aggravation for adults? Should children and their upbringing be seen as something which adds meaning to life or are they an annoyance? He attempts to provide not only parents, but also medical and care providers with a glimpse into the tenderness and fragility these children embody. He starts with their earliest moments: how they would have liked to stay in the womb; how lying in the incubator is unpleasant; how all the life-saving treatment was also painful and difficult to cope with. He shows that these children need even more attention, softness, subtle care and love and that one should not confront this need with impatience or anger. 

When we at Notube work with preterm children, we understand the vulnerability of premies. But, we also have the parents in mind, many of whom were not entirely prepared for the things with which they would be confronted. We are aware of what parents go through, watching their children in the incubator wired with a lot of cables, oxygen tubes and a nutrition device. We know that the enteral nutrition was life saving for the child while in the first days or even weeks in the NICU. Even when the child could be taken home there were still a lot of tasks that the parents now had to perform. We know that parents of premies are trained helpers who know their child and the child’s needs best. Parents of premies notice their child’s slightest signals and detect their meaning much better than anyone else ever could. We are considerate of this fact and accept that we do not know better.

We want to address any anxieties that parents may have that their child may starve in it’s transition process from enteral to oral feeding. We recognize that every gram the child weighs is the result of a long journey, sometimes even a fight against oral aversion or the child’s need to vomit. We know that pediatricians tell parents that the brain development is inhibited if a child does not develop according to expectation. We know the studies underlying this conviction, but we see also the dramatic impact that successful and considerately administered tube weaning can have on a child’s life.
It is our goal to help parents and children to enjoy life and to use their abilities and possibilities instead of looking at deficiencies and shortcomings. The life of a premie might have a hard and uneven start but it is as valuable as all lives. Every one of these children is a small wonder: of creation, medicine, the will to live, their parents’ support, and the nearly boundaryless extent of what a child can learn.

Peter Scheer