Prenatal compared with postnatal cleft diagnosis: What do the parents think?

Abstract

Since the 1980s, prenatal detection of cleft lip with or without cleft palate (CLP) is possible with a transabdominal ultrasound. The improvement of prenatal detection has resulted in an increased demand for prenatal information and counselling. The aim of this study was to, by means of a questionnaire, evaluate how families, who received the diagnosis prenatally and postnatally, respectively, think about the prenatal and postnatal consultation. Patients referred prenatally or postnatally to the department, due to CLP, between January 2006 and September 2010 were included in the study. Thirty-six of the families (95%) answered the questionnaire concerning prenatal counselling. A total of 46 parents (82%) answered the questionnaire concerning postnatal counselling. In the prenatal group, half of the patients were first informed by the ultrasound unit, whereas 16% were initially informed by the cleft team. More of the families that were informed by the cleft team were content with the information received than the families who were informed by the ultrasound unit. The majority of the families were satisfied with the structure of the consultation. Most of the patients in the postnatal group were happy with the postnatal consultation. Most of the parents in the postnatal group would have wanted to know about the diagnosis prenatally. The great majority of the parents was happy with the consultation with the cleft team and thought that they received enough information. However, the information received at the referring units could be improved. Parents seem to want information on the cleft diagnosis and its treatment as soon as possible.

Prenatal counselling for congenital anomalies: a systematic review

“…Regarding preferences for prenatal or postnatal counselling, there were mixed results from two studies involving parents of children with CLP. Berggren et al . found no difference in satisfaction with clinical care between parents who received prenatal versus postnatal counselling; however, 57% of parents who learned of the diagnosis after delivery would have preferred to receive the baby's diagnosis prenatally.…”

Professional opinion on oral cleft during pregnancy: a comparison between Israel and the Netherlands

“…It is the counselor's responsibility to inform parents about the etiology, pathogenesis, and associated anomalies; and the medical, surgical, and clinical needs of a child with an oral cleft. However, a former study showed that many parents were unsatisfied with the initial information they received at the ultrasound unit. In the study by Hsieh and Rey‐Bellet, some mothers expressed feeling anxious about their baby's condition, and, because of the limited information provided by professionals, some even feared that the condition might be associated with impaired intelligence.…”

Parental Attitude Toward the Prenatal Diagnosis of Oral Cleft

“…Finally, participants were included during pregnancy, and although TOP was not standardly discussed, the option to terminate the pregnancy was realistic at 20 weeks of gestation. Because previous studies concerning coping with the prenatal diagnosis of clefts were of retrospective and cross-sectional design (Maes et al, 1998;Matthews et al, 1998;Berk et al, 1999;Davalbhakta and Hall, 2000;Johnson, 2003;Rey-Bellet and Hohlfeld, 2004;Nusbaum et al, 2008;Berggren et al, 2012), their results not only might contain ascertainment bias but also might have influenced parental attitudes toward OC because the children were already born and/or treated (surgically). Furthermore, in contrast to other studies, the process of counseling in our study was uniform because there was always a plastic surgeon and psychologist from the cleft lip and palate team involved (Nusbaum et al, 2008;Berggren et al, 2012).…”