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23 - The Groningen Protocol

from Section 3 - When a child dies: ethical issues at the end of life

Published online by Cambridge University Press:  07 October 2011

By
A.A. Eduard Verhagen  and
John D. Lantos
Edited by
Douglas S. Diekema ,
Mark R. Mercurio  and
Mary B. Adam
Douglas S. Diekema
Affiliation:
Seattle Children's Research Institute
Mark R. Mercurio
Affiliation:
Yale University School of Medicine
Mary B. Adam
Affiliation:
Department of Pediatrics, University of Arizona School of Medicine, Tucson
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Summary

Case narrative

When Marieke was born, her pediatrician noticed skin erosions and blistering of the skin on all extremities. The lips and skin of her face showed raw red areas but otherwise she was vigorous and appeared healthy. She was transferred to a university hospital on the second day of life. Skin tests and biopsy revealed the diagnosis of severe dystrophic epidermolysis bullosa.

Epidermolysis bullosa (EB) is a rare skin disorder that manifests itself with an exceptional liability of the skin to blister after minor mechanical trauma. Because of a genetic abnormality, the different skin layers do not stick together adequately, so that the skin surface can easily break down after cuddling, rubbing, scratching, or swallowing. Marieke suffered from the most severe form in which permanent scarring leads to deformities, and involvement of various organs results in early postnatal death or chronic progression. There is no cure for EB.

Type
Chapter
Information
Clinical Ethics in Pediatrics
A Case-Based Textbook
 , pp. 131 - 136
Publisher: Cambridge University Press
Print publication year: 2011

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References

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