Tower of Babel – Press release of the International Federation for Spina Bifida and Hydrocephalus (IF)

PRESS RELEASE
5 March 2012

""Killing newborn children because they are not welcome is called ‘After-birth abortion’  “After-birth abortion: why should the baby live?” by Dr. Alberto Giubilini from Italy and Dr Francesca Minerva from Australia published in the Journal of Medical Ethics. They cite the Groningen Protocol (2002) that propose new-borns with specific disabling conditions like Spina Bifida possibly leading to a life of pain and suffering should be allowed to die. However recent research published in “Pediatrics” the journal of the American Academy of Pediatrics has soundly refuted this extreme pain and suffering argument and would support the belief that this was exaggerated in the original document. It is the lack of treatment that causes pain and suffering, not the initial disability.

Giubilini and Minerva enlarge the target group for elimination to all ‘not welcome children’. By mixing the terminology of (after-birth) abortion, euthanasia, and late termination of pregnancy they  provocatively create confusion in this ethical debate.

IF refers to its resolutions on prenatal screening and on the Groningen protocol in answer to this article. The attention the mass media gave to this controversial article indicates the influence it may have and also warns us that the direction the society is going. The recent article in Pediatrics questioning the Groningen protocol do not got the same attention.

IF, the worldwide network of persons with spina bifida and hydrocephalus, stresses that all persons with spina bifida and other disabilities have the right to life and to all services that can improve the quality of their life. This is completely in line with UN Convention on the Rights of Persons with Disabilities and two IF and EDF resolutions on prenatal selection and the Groningen Protocol.

Contact
Pierre Mertens, IF president, pierre.mertens@telenet.be (NL-EN-FR)
Lieven Bauwens, IF secretary general, lieven.bauwens@ifglobal.org / +32(0)2 502 04 13 (NL-EN)

What is IF?
The International Federation for Spina Bifida and Hydrocephalus is the global umbrella for national and regional Spina Bifida and Hydrocephalus organisations. IF advocates for primar prevention of these disabilities and for everything that improves the quality of life of persons affected with the impairments.

For more information, check www.ifglobal.org

What are Spina Bifida and Hydrocephalus?
Spina bifida is a neural tube birth defect (NTD) which occurs within the first four weeks of pregnancy. The spinal column fails to develop properly resulting in varying degrees of permanent damage to the spinal cord and nervous system.

Infants born with spina bifida may have an open lesion on their spine where significant damage to the nerves and spinal cord occurs. Although the spinal opening is surgically repaired shortly after birth, the nerve damage is permanent. This results in varying degrees of paralysis of the lower limbs, depending largely on the location and severity of the lesion. Even with no visible lesion, there may be improperly formed or missing vertebrae, and accompanying nerve damage.

Hydrocephalus is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as “water on the brain,” the “water” is actually cerebrospinal fluid (CSF) — a clear fluid surrounding the brain and spinal cord. The excessive accumulation of CSF results in an abnormal dilation of the spaces in the brain called ventricles. This dilation causes potentially harmful pressure on the tissues of the brain.

For more information, check www.ifglobal.org

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One thought on “Tower of Babel – Press release of the International Federation for Spina Bifida and Hydrocephalus (IF)

  1. Pingback: “Nothing about us without us!” | DREAM Research

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