Pierre Mertens, President of the International Federation for Spina Bifida
and Hydrocephalus, had a meeting on Monday 10 October 2005 with Dr. de Jong
and Dr. Kompanje, who both have doubts about the appropriateness of Dr. Verhagen’s “Groningen
Protocol in the case of spina bifida (cf. infra).” This protocol is developed
to provide a (legal) frame for doctors facing the birth of a ‘severely’ disabled
child and presented in the New England Journal of Medicine, 10 March 2005.
22 cases of deliberate termination of life of on such babies have been reported - but not prosecuted - from 1997 until 2004. Since no legislative framework exists for these babies, one can assume that there are many more cases that are not being reported.
Several elements in this protocol do not seem to be correct or verifiable, making the Groningen Protocol an inadequate instrument to decide over life and death of a new-born. Dr. de Jong and Dr Kompanje have the following arguments:
All babies had spina bifida
Why do all cases concern babies with spina bifida? Dr. de Jong says: “I knew that this report was coming up, but when I read it I thought: “What? The 22 described cases were all children with spina bifida! I’ve been treating such new-borns for years and I never had the impression that they were suffering unbearably.” Dr. Erwin Kompanje: “I expected it to be cases of children suffering from severe congenital heart conditions or from trisomy 18 – a complex syndrome involving a lot of suffering. But it only concerned ‘severe cases of spina bifida’. What’s that, what does that mean? That remains completely unclear.”
Pain and suffering of the baby
The argument that the babies are suffering unbearable pain is plainly not
correct. Dr. de Jong and Dr. Kompanje monitor many babies with spina bifida
and hydrocephalus and know that they do not have pain, and if the baby has
pain, it can be easily sedated. Since this is the experience of professionals,
they want to build on this by conducting research in pain assessment on babies.
Dr. De Jong: “I don’t believe that babies with spina bifida are
suffering. I would like to say: show me your pain protocol.” Dr. Kompanje: “Whichever
suffering can nearly always be alleviated. We have loads of remedies.”
Quality of life
The simple fact that the baby has spina bifida is not a sufficient reason
for ending the life of the baby. Adults with spina bifida state that having
an impairment has not prevented them of leading a satisfying life. The quality
of life cannot be judged before the life has even started. A disabled child
can have a wonderful life, while a perfectly (physical) healthy person can
live a miserable life. All of this depends on many other factors, the medical
factor being just one of them. The quality of life also depends on the society
that allows or does not allow people with disabilities within their midst.
Pierre Mertens, Dr. Rob de Jong and Dr. Erwin Kompanje agree that the choice of the parents is primordial in the process of having a disabled child. Options include: prenatal screening and abortion, and once the baby is born to treat or not to treat its disorder. However, it is the doctor’s task to treat the child, not to ‘kill’ it.
IF president Pierre Mertens
At the IF office
What is spina bifida
Spina bifida is a congenital defect of the spinal column with an opening in one or more vertebra. Sometimes the opening is covered by the skin, but many times the skin is not intact either and the spinal cord is affected. This nearly always implies dysfunctional symptoms of the legs, such as paralysis and numbness. In many cases the child also has hydrocephalus and when it grows older it will become incontinent. Every year, about 100 to 180 babies in the Netherlands are born with spina bifida. When the decision for treatment is taken, the ‘cleft spine’ is closed by a neurosurgeon. The dura mater and the skin are closed; the dysfunctional symptoms are irreversible. Thanks to the surgery the danger for infection is drastically reduced. Without treatment the child will die within a few months, due to an infection or other complications, such as hydrocephalus. It may also die of renal problems if surgery is not performed.
What is the Groningen Protocol?
The Groningen Protocol is an instrument developed to assess cases in which a decision is made to actively end the life of a newborn. It includes three categories of infants and newborns. First, infants with no chance of survival. Second, infants with a very poor prognosis and dependent on intensive care. Finally – the group to which children babies with spina bifida belong - infants with a hopeless prognosis who experience what parents and medical experts deem to be unbearable suffering including the prospect of an extremely poor quality of life.
What is IF?
The International federation for Spina Bifida and Hydrocephalus (IF) is the
world-wide umbrella organisation (INGO) for Spina Bifida and Hydrocephalus
created in 1979 by national organisations of people with these impairments
and their parents. Today IF's membership consists of national umbrella organisations
for spina bifida and hydrocephalus in over 40 countries.
IF aims to disseminate information and expertise throughout the world to families, individuals, professionals and volunteers involved in the spina bifida and hydrocephalus field.
The mission of IF is to improve the quality of life of people with spina bifida and hydrocephalus throughout the world and to decrease the prevalence of spina bifida and hydrocephalus by primary prevention.