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Severe Fetal Abnormality and Outcomes of Continued Pregnancies: A French Multicenter Retrospective Study

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Abstract

Objectives To describe a population choosing to continue with their pregnancy despite being eligible to receive a medical termination of pregnancy (TOP). Methods Nine-year retrospective study of data (01/01/2006 to 31/12/2014) from three French prenatal diagnostic centers describing the perinatal outcomes of these pregnancies. Pregnancies were classified according to etiology and severity of its fetal pathology. Several perinatal parameters were described: maternal characteristics, parental prenatal choices and information on the pregnancy and neonatal outcomes. These parameters were classified in function of the severity of fetal pathology according to the classification proposed by Dommergues et al. (Prenatal Diagnosis 30(6):531–539, 2010) Results Overall, 155 pregnancies were continued; 140 have been included in our study. Pregnancy outcomes consisted of four TOPs (2.9%); 20 in utero deaths (14.3%); 110 live births (78.6%) of which 55.4% were still alive at 2 years old as the most recent information; and 6 (4.2%) with unknown outcomes. In 27 cases, perinatal palliative care was requested (an increase of 37% over 9 years). 36.4% of cases were classified as having a high mortality risk; 19.3% with a severe handicap risk; 11.4% with a risk of isolated intellectual disability; and 32.9% with an uncertain prognosis. The parental decisions to choose perinatal palliative care were significantly higher within the high mortality risk group as compared to other severity groups (p < 0.001); this group also had a significantly higher mortality (p < 0.001), with a survival rate of 26.3%. Conclusion Over the study period, in France, there was an increase in continued pregnancies, despite a diagnosis of severe fetal pathology in France. Therefore, it is essential that perinatal professionals are provided with a palliative care framework and training in their approach for this population which is heterogeneous in terms of etiology.

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Author information

Authors and Affiliations

  1. Équipe Ressource Régionale de Soins Palliatifs Pédiatriques Aquitaine, Groupe Hospitalier Pellegrin, Hôpital des Enfants, Place Amélie-Raba-Léon, 33076, Bordeaux Cedex, France

    Marine Bourdens & Julie Tadonnet

  2. Service de Néonatologie et Soins Intensifs, Hôpital Nord, Assistance Publique-Hôpitaux de Marseille, 13015, Marseille, France

    Laura Hostalery & Barthélémy Tosello

  3. Service de Néonatologie, Maternité, Centre Aliénor-d’Aquitaine, CHU de Bordeaux, 33000, Bordeaux, France

    Laurent Renesme

  4. UMR 7268 ADÉS/EFS/CNRS, Aix-Marseille Université, 13005, Marseille, France

    Barthélémy Tosello

Authors
  1. Marine Bourdens
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  2. Julie Tadonnet
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  3. Laura Hostalery
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  4. Laurent Renesme
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  5. Barthélémy Tosello
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Corresponding author

Correspondence to Marine Bourdens.

Appendix: Leonetti Law of 22 April 2005

Appendix: Leonetti Law of 22 April 2005

The main directives derived from this law are:

  • Ratification of ability to refuse extraordinary therapeutic measures (Art. 1)

  • More rigorous enforcement of provision of information to patients (Art. 2)

  • More rigorous enforcement of freedom of choice accorded to conscious patients (Art. 6)

  • The introduction of the concept of “double effect”

  • The introduction of the “collegial procedure” for patients unable to express their wishes

  • The decriminalization of limitation of treatments (Art. 122-4 of the French Criminal Code) provided procedure is adhered to

  • Ratification of palliative care (extended to community-based healthcare establishments and more rigorously enforced in healthcare institutions).

The French Law of 22 April 2005 on patient rights and end-of-life reinforces the rights of all patients and accords specific rights to end-of-life patients. The practitioner must support the patient until their final moments, ensure quality of life through appropriate care and measures, protect the patient’s dignity, and comfort their entourage. The practitioner does not have the right to deliberately cause death (Art. R.4127-38 of the French Public Health Code). As regards situations of lethal fetal abnormality, this law applies to the unborn baby. The newborn acquires the legal status of a person; they too can die and the law makes it possible for them to die supported, relieved and surrounded.

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Bourdens, M., Tadonnet, J., Hostalery, L. et al. Severe Fetal Abnormality and Outcomes of Continued Pregnancies: A French Multicenter Retrospective Study. Matern Child Health J 21, 1901–1910 (2017). https://doi.org/10.1007/s10995-017-2305-0

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  • DOI: https://doi.org/10.1007/s10995-017-2305-0

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