Hilgers, T. W. (2004). Chapter 60: Lethal Congenital Anomalies: Prenatal Diagnosis and the Management of Pregnancy. In The Medical and Surgical Practice of NaProTECHNOLOGY (pp. 813-824).
Hilgers TW. Chapter 60: Lethal Congenital Anomalies: Prenatal Diagnosis and the Management of Pregnancy. In: The Medical and Surgical Practice of NaProTECHNOLOGY. 2004. p. 813-824.
Hilgers, T. W. "Chapter 60: Lethal Congenital Anomalies: Prenatal Diagnosis and the Management of Pregnancy." The Medical and Surgical Practice of NaProTECHNOLOGY, 2004, pp. 813-824.
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Pope Paul VI Institute for the Study of Human Reproduction, Omaha, Nebraska.027jqx654
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RRM Academy Synopsis
Textbook chapter argues for hospice care after lethal fetal diagnosis
A 2004 textbook chapter makes the case for perinatal hospice, support for families through pregnancy, birth and grief after a lethal fetal diagnosis. The chapter cites a study in which Triple Test screening gave 54 false positives for every true Down syndrome case. The chapter also reviews how accurate common prenatal tests are and shares four family stories.
Key Findings
In a meta-analysis of 57,676 pregnancies, Triple Test screening detected 67 of 103 Down syndrome cases (65.0%), with 54.3 false positives for each true positive.
Across five studies published 1996 to 1998, chorionic villus sampling ended in 316 spontaneous abortions among 11,838 procedures (2.67%).
In a published perinatal hospice report, 27 of 31 patients (87%) chose to take part in the program.
Among 69 IVF pregnancies, 21 (30.4%) screened positive for Down syndrome. At birth, none of the infants had Down syndrome or a neural tube defect.
In three studies, ultrasound identified 87 percent, 91.1 percent and 98 percent of affected spina bifida cases.
Interpretation
The chapter makes the case for perinatal hospice after a lethal fetal diagnosis. The chapter also reviews how well common prenatal tests work. The Triple Test's high false positive rate and the chorionic villus sampling miscarriage rate give physicians real numbers to share with families deciding whether to pursue more testing. In the cited hospice program, 27 of 31 eligible patients chose to take part. That high enrollment rate shows many families want continued care after this diagnosis. The chapter's family stories show what that care can look like: medical management, delivery planning and bereavement support together.
RRM Context
The chapter appears in a textbook on NaProTechnology, a method formalized by Dr. Thomas W. Hilgers. The future-directions section links limited mucus cycles charted with the Creighton Model FertilityCare System (CrMS) to ovulation-related abnormalities and proposes this as a direction for future research. Restorative reproductive medicine treats a lethal fetal diagnosis as a reason for more medical attention and more emotional support for the family through birth and loss.
Our editorial summary of this paper, not the article's abstract.
Abstract
This chapter reviews the tools used for prenatal and preimplantation evaluation of genetic abnormalities: ultrasound, amniocentesis, chorionic villus sampling, serum markers including the Triple Test, percutaneous umbilical blood sampling, fetal skin biopsy and preimplantation diagnosis. Hilgers argues that prenatal diagnosis has moved from making a diagnosis to assist the fetus toward making a diagnosis so that the affected baby can be aborted. Citing a meta-analysis of Triple Test screening, the chapter reports 54 false positive results for every true positive result and concludes that follow-up amniocentesis, with its fetal loss rate, cannot be medically or ethically justified in that setting. The chapter closes with case studies, several in the parents' own words, of families supported through pregnancies with a lethal congenital anomaly, and describes the Perinatal Hospice program reported by Hoeldtke and Calhoun.
Ethics and Policy › Reproductive Ethics › Embryo Status · Birth and Delivery › Birth Outcomes › Maternal Morbidity · Mental Health and Psychosocial Care › Grief and Loss › Bereavement Care
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