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“It could have been my child”
koen and Eline

Zuidlaren, Holland.  Bosk, the Dutch Association of motorially handicapped people and their parents, wrote a very critical letter to the State Secretary of Health, Welfare and Sport mrs. C.I.J.M. Ross-van Dorp. Eline Groenheijde is the mother of a son with Spina Bifida and a member of Bosk. The fact that euthanasia on children with Spina Bifida is not being prosecuted is shocking news for parents with children who have Spina Bifida.

“It could have been my child” says Eline Groenheijde. She is the mother of Koen, a 5-year old with Spina Bifida. Koen has the most severe form, an open spinal cord from which a sac filled with fluid and nerve tissue protrudes. He was born with hydrocephalus, a malformation of the cerebellum, and only one kidney.

It was clear that Koen, despite the severity of his condition, would make it ok. He underwent 6 operations in the span of 6 months. His back was closed and they inserted a shunt in his head, after which he suffered from a number of infections. After that first 6 months he has not been operated on since.

Koen lives in Zuidlaren together with his parents and sister of 1.5 years of age. Eline Groenheijde was “pretty shocked” when her son was born with Spina Bifida. They handed me a brochure. I saw a picture of a girl in a wheelchair, but they did not answer the real questions I had: can my child attend school? Will he be able to play with friends? Can he find his own spot in society later on?

She became a member of BOSK, the Association for motorially handicapped people and their parents. By having discussions and conversations with other parents and with adults with Spina Bifida I got some insight into the daily lives of people with Spina Bifida.

“Sometimes they call Koen a ‘spiny” and I see an injured spinal cord on legs. That is not my son. The condition he has is only one single aspect of him. He is a normal child living a normal life. He plays with his friends, has a sense of humor and uses his tricycle to go to a regular school. At home he does not need a wheelchair. He is able to walk about the house and garden even though he has a tendency to fall a lot.

I do not want to play down the effects of Spina Bifida. Koen is being catherized five times a day, his intestines are being cleaned once a day and he received physiotherapy. After the birth of her daughter she realized that caring for and worrying about Koen is a struggle sometimes. “Now and then I find it very demanding. Soon I hope to visit a psychologist because I feel that I am making no progress in dealing with the problem.

Because Koen was born with hydrocephalus, his brain tissue may have been damaged. Up to now we have not noticed much of this. He seems younger when compared with his class mates. However, his development has never shown any alarming deterioration. Many kids who are born with hydrocephalus can expect some problems, for example in spatial orientation.

Groenheijde is a member of the BOSK Spina Bifida and Hydrocephalus work-group. This Association battles against the negative image handicapped people have. If the Government decides to offer a prenatal diagnostic evaluation to all pregnant women, the implicit message is that it is better that handicapped babies not be born.

Because of the somber and one sided picture physicians paint of Spina Bifida, parents decide to either abortion or euthanasia of the child, whilst this child with this condition could live a reasonably normal and certainly worthy life, says Groenheijde. My thinking is not influenced by religion, but out of  interest for the child. Doctors should treat every child if this is technically possible. Nobody has the right to terminate the life of a child that already has been born. Life itself should make that decision.

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