Parental views of antenatal testing and termination following a diagnosis of cleft lip

ABSTRACT

Fetal anomaly screening at 18–21 weeks now routinely includes cleft lip. If detected, the manner in which the diagnosis is communicated can considerably influence prospective parents’ decision-making in regard to further testing and termination of pregnancy (TOP). Given the known psychological impact of an antenatal diagnosis of cleft lip on prospective parents, this study aimed to explore the decision-making process from the parents’ perspective, in order to evaluate how well current practice is meeting guidelines. Data from 217 parents of children born with cleft lip (with or without cleft palate) were collected using a mixed-methods online survey. Respondents reported feeling upset, offended and/or anxious following the diagnosis, due to unsatisfactory information and a perceived lack of empathy from health professionals. Some respondents had felt under pressure to make a decision quickly, with a minority having regretted undergoing amniocentesis, and/or experiencing significant distress at having come close to TOP unnecessarily. A number of suggestions are made as to how the discussion between parents and health professionals could be improved, to ensure that the information and support needs of families affected by cleft lip are fully addressed.

KEYWORDS:

• Diagnosis
• cleft lip
• amniocentesis
• termination
• parent perspective
• ultrasound
• sonography
• pregnancy

Acknowledgments

This study was partially supported by the Vocational Training Charitable Trust Foundation (registered charity 1155360). We are grateful to all the participants, and to the charitable organisations who helped to facilitate this study. The VTCT Foundation Research Team at the Centre for Appearance Research are: Dr Amy Slater, Dr Heidi Williamson, Dr Nicola Marie Stock, Dr James Kiff, Mr Nicholas D Sharratt, Mr Fabio Zucchelli, Ms Ella Guest, Ms Claire Hamlet, Ms Bruna Costa, Ms Jade Parnell, Professor Nichola Rumsey, and Professor Diana Harcourt.

Data availability

For access to any resources associated with this manuscript, please contact the corresponding author.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was partially supported by the Vocational Training Charitable Trust Foundation [VTCTF are a registered charity: 1155360].