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Don't let my baby be like me.

Don't Let My Baby Be Like Me Paul G. lives in a small town over three hours' drive from the nearest major city. As a young child he was taken to a hospital in the city because o his grossly deformed hands and arms and his repeated passage of large, bloody stools. He had nearly died from the hemorrhaging and had required several transfusions. While at the hospital his family learned that Paul was afflicted with TAR, radial aplasia thrombocytopenia syndrome. The bleeding was caused by his low platelet count, but in most patients with TAR this is only a problem in early infancy. None of his relatives who had been similarly affected has survived past infancy, although there were suspicious that some of the children might have had greater efforts been made to obtain treatment for them. The doctors said that the syndrome was inherited in an autosomal recessive fashion and that the intramarriage of family members in the isolated town had contributed to the high frequency of the syndrome in Paul's family.

Paul had returned home, but from his perspective he led a miserable life. The bones in his lower arms were missing and he could grasp nothing securely in either hand. He could feed himself only with the greatest difficulty.

Although he had learned to enjoy reading at school, taunting and physical assaults had tortured his childhood, and he had only completed the fifth grade.

He married his second cousin's fifth daughter, Sarah. Sarah's brother had been born with arms like Paul's, and she felt that no one from a "normal" family would consider her as a potential mate. She and Paul fought constantly because he could do not useful work and Sarah's meager earnings left them poorly clothed and frequently hungry.

Now Sarah is pregnant and Paul has returned to the city's university hospital seeking guidance. He feels that to father a normal child would give his life meaning, but he and his wife are desperately fearful that their child will be afflicted with TAR. They have talked about whether they would be willing to seem medical attention for such a child if bleeding developed. They have even discussed not making any special efforts at feeding. Neither of them is comfortable with such plans, however, and they have received support from their families to seek help from the university hospital's genetics clinic in the city.

What counsel should be given?
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Title Annotation:Special Supplement: International Perspectives on Biomedical Ethics; case study
Author:Campbell, A.G.M.; Correia, Clara Pinto; Kawashima, Hiroko; Ekunwe, Ebun O.
Publication:The Hastings Center Report
Date:Aug 1, 1988
Words:404
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