Because IF would like to invest more in its allies, a meeting with the two physicians mentioned above took place on October 10. Dr. Rob de Jong is a pediatric neurosurgeon at the Sophia Children’s Hospital in Rotterdam and Dr Erwin Kompanje is a clinical ethicist at the Erasmus Medical Center in the same city. In this fruitful meeting both doctors explain that in their experience children with Spina Bifida do not suffer unbearably and that they will not necessarily have a poor quality of life. They are building on this experience through scientific research and are currently testing the babies’ suffering by means of a pain protocol. Initial results show what they already expected; babies with Spina Bifida are not in much pain. For this reason they are amazed that the 22 described cases in which the life of a newborn was ended were all babies with Spina Bifida.
Another important aspect which was discussed in the meeting was that a doctor cannot possibly predict how a person will perceive its disability. Both doctors have examples of physically healthy persons who go through life unhappily and physically disabled persons leading fulfilling lives. Consequently, ending the life of a baby with Spina Bifida before it has even started should be out of the question.
Following their article “Questionable basis for hopeless and unbearable suffering” as the criterion for active euthanasia in newborns with spina bifida, published in “Nederlands Tijdschrift voor Geneeskunde”, Dr. de Jong and Dr. Kompanje were interviewed by the Dutch newspaper Trouw in which they expressed their views and concerns. ( for English translation of the article, read more)