Parents' views of 4D ultrasound scans following diagnosis of cleft condition

Abstract

Ceft conditions are the most common congenital craniofacial anomalies. Feeding, hearing, speech and the alignment of teeth are often affected, particularly where a cleft of the palate is present. The aim of this qualitative study was to explore the value of 4D ultrasound scans for parents where a cleft had been identified on a routine 2D ultrasound scan. Parents completed three questionnaires: once they had decided to proceed with the 4D scan; as soon as possible after the 4D scan at about 28 weeks gestation; and postnatally at a cleft clinic. The questionnaires assessed parents' reasons for having the scan, expectations of the scan and advantages and disadvantages. The results suggest that for most of the parents their expectations were met or exceeded, they would recommend having a 4D scan to others and overall the advantages outweighed the disadvantages. The majority of parents were not disappointed.

The impact of participation in genetic research for families with cleft lip with and without cleft palate: a qualitative study

“…Participation in itself led to an increased understanding of the genetic aspect of CL/ P, and this was met with mixed reactions. As has been described in the literature, many parents had their own theories about what may have caused CL/P in their child, many of which included concerns that it was something that they had done to cause the condition (Beaumont 2006;Cadogan et al 2009;Kuttenberger et al 2010;Martin 2005).…”

“…These reported feelings of guilt or blame and theories about what may have been done wrong in a pregnancy highlight the importance of clear information, support at the time of diagnosis and in particular reassuring parents that it is not their fault (Beaumont 2006;Cadogan et al 2009;Colabrese 2010;Kuttenberger et al 2010;Martin 2005). Parents have also previously reported frustration at a lack of information about the cause and possible explanations for CL/P (Nelson et al 2012).…”

“…When considering the overall effect of having a child with CL/ P, the majority of the literature is focussed on mothers' experiences, with a particular focus on initial diagnosis and early feeding difficulties. This is despite the fact that the current protocol for CL/P can result in the child, and therefore, the whole family becoming involved in a treatment process that lasts in excess of 20 years (Cadogan et al 2009).…”

The Experiences and Support Needs of Grandparents of Children Born With Cleft Lip and/or Palate

“…Although these impacts have been explored in parents of children born with CL/P (Nelson et al, 2012), little research has looked into the impact on wider family members. Studies investigating psychosocial well-being in parents suggest that emotional experiences, such as worry, and feelings of grief are common at the time of diagnosis (Cadogan et al, 2009; Chuacharoen et al, 2009). Parents may also find it difficult to adjust to the implications of their child’s condition and report symptoms of depression and anxiety (Nelson et al, 2012); particularly in relation to the extensive surgical treatment that their child must undergo (Klein et al, 2006).…”

Picture perfect: ‘4D’ ultrasound and the commoditisation of the private prenatal clinic

“…This blurring of the social or medical boundary is more profound if a foetus has a structural defect such as cleft lip or palate. In the medical profession, some have praised 4D scans for diagnostic accuracy when foetal defects, especially defects requiring surgical interventions such as facial clefts, are suspected or evident (Cadogan et al., 2009). Consider this extract from a 4D scan between Esther (sonographer), Mrs Clayton (mother), Mrs Clayton’s mother and Mrs Clayton’s daughter after an initial diagnosis of a unilateral cleft lip:Esther: Hopefully this makes things clearer for you.…”