The impact of having a baby with cleft lip and palate on parents and on parent-baby relationship: the first French prospective multicentre study

Abstract

Background : The objective of this prospective, multidisciplinary and multicenter study was to explore the effect of a cleft lip, associated or not with a cleft palate, on parents, on parent-infant relationship, and on the baby’s relational development. It also highlighted how the type of cleft and the timing of the surgery could impact this effect. Method : 158 infants, with Cleft lip with or without Palate, and their parents participated in this multicenter prospective cohort. Clinical evaluations were performed at 4 and 12 months postpartum. The impact on the parents and on the parent-infant relationship was evaluated by the Parenting Stress Index (PSI), the Edinburgh Post-partum Depression Scale (EPDS) and the Impact-on-Family Scale (IOFS). The relational development of the infant was assessed using the Alarm Distress Baby Scale (ADBB). The main criteria used to compare the infants were the severity of cleft and the time of surgery. Results The timing of surgery, the type of malformation or the care structure had no effect on social withdrawal behaviors of the child at 4 and 12 months postpartum (ADBB). Furthermore, early intervention significantly decreased maternal stress assessed with the PSI at 4 months. Parents for whom it had been possible to give a prenatal diagnosis were much better prepared to accept the waiting time between birth and the first surgical intervention (IOFS). Higher postpartum depression scores (EPDS) were found for both parents compared to the general population. Conclusion : A joint assessment of the mental health of both infants and parents is required in the follow-up of cleft lip and palate. Even if most families are remarkably resilient faced with this major cause of stress, a significant proportion of them could require help to deal with the situation, especially during this first year of follow-up. An assessment of the child’s social withdrawal behaviour and of the parental stress and depression appears useful, in order to adapt care to infant and parent’s needs. Trial Registration: ClinicalTrials.gov Identifier: NCT00993993. Registered 10/14/2009 < https://clinicaltrials.gov/ct2/show/NCT00993993?term=grollemund&draw=2&rank=1.

Virtual Reality as parent education tool in pre‐surgical management of cleft lip and palate affected infants—A pilot study

“…9 Awareness among the parents and the caregivers is very essential among these patients as this is directly associated with the overall growth and development of the affected infants. 10 Management of cleft lip and palate affected infants requires the parents to acquire certain trained skills which help them to manage the basic needs of the infant. 11,12 Lack of knowledge and awareness and presence of certain myths among parents makes it difficult for them to accept the need of PNAM.…”

“…The psychological distress, helplessness and emotional burden remains extremely high among parents/caregivers of these infants 9 . Awareness among the parents and the caregivers is very essential among these patients as this is directly associated with the overall growth and development of the affected infants 10 …”

Surgery, Success, and the Role of the Patient in Cleft Palate Operations, circa 1800–1930

“…168 One hundred years later, the surgical treatment for cleft palate remains complicated and is still not standardized; debates about technique and the best time to operate are ongoing. 169 Until the late 1990s in Britain, for example, there was a lack of coordination in cleft palate care, which resulted in "suboptimal surgical outcomes, restricted facial growth and poor speech." 170 There was increased safety, certainty, and knowledge in surgical practice throughout the nineteenth and early twentieth centuries, coupled with a rise in confidence in surgery and the surgeon's control over the patient.…”

Isolation, Uncertainty and Treatment Delays: Parents’ Experiences of Having a Baby with Cleft Lip/Palate During the Covid-19 Pandemic

“…Having a baby born with a cleft lip and/or palate (CL/P) can have both social and psychological impacts for parents (Nelson, Glenny et al, 2012). While generally not in the range of clinical distress, research has indicated that parents of children with CL/P may be more likely than the general population to experience parenting stress (Boztepe et al, 2020; Stock et al, 2020), as well as symptoms of post-traumatic stress (Despars et al, 2011) and postpartum depression (Grollemund et al, 2020). Further, parenting a child with CL/P can affect overall familial quality of life (QoL; Antunes et al, 2014; Macho et al, 2017; Emeka et al, 2017).…”