ESPE Abstracts (2015) 84 WG6.2

ESPE2015 Working Groups Turner Syndrome (5 abstracts)

The Challenges of Prenatal Diagnosis: The Experience of a Supportive Group for Parents of Children with TS

Maura Foresti

Pediatric Endocrinology Unit, Department of Pediatrics, S. Orsola-Malpighi University Hospital of Bologna, Bologna, Italy

Background: Prenatal diagnostics (PND), as any achievement in genetic research, brings ethical and moral dilemmas that need to be a subject of reflection and debate in modern societies.

Objective and hypotheses: Once the expecting parents have undergone PND, data about abnormalities confront them with moral dilemmas regarding the decision on the life or death of the unborn child, the responsibility for it, and possible suffering during its future life. Psychological consequences may regard the relationship between parents and the newborn. Psychological effects of this experience sometimes do not appear until years after the decision. We would like to contribute to identifying the best practices when PND of TS occurs.

Method: We describe the experience of a group for parents of children with TS conducted by a psychotherapist (with the collaboration of another psychologist writing a report). At first we invited all the couples of our clinics who had a girl with TS (0–10 years old) and new couples joining every year (overall 12 couples, five who received PND). We planned a Saturday encounter of 2 h per month (8–10 per year). The group has now been meeting for 6 years.

Results: The group has allowed parents to name and share many hidden and unthinkable issues connected to PND of TS. In their own words: ‘I have realized I‘m looking at my child with ‘TS lenses’’, ‘I feel guilty for my decision of giving her so many problems’, ‘I’m carrying a backpack full of bad news for her since the ‘PND day’: I don’t know when, how and what to tell her!’, ‘After PND, I couldn’t feel her moving in the uterus anymore’.

Conclusion: Each individual who profits and suffers from PND, experiences it in a very idiosyncratic human way, however our experience underlies the necessity of supporting parents after a PND of TS with specific tools. We noticed some differences between PND and post-natal diagnosis. A supportive group has proved to be a good instrument.

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