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Published in: BMC Pediatrics 1/2020

01-12-2020 | Cleft Lip and Palate | Research article

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

Authors: Bruno Grollemund, Caroline Dissaux, Pascale Gavelle, Carla Pérez Martínez, Jimmy Mullaert, Toni Alfaiate, Antoine Guedeney, CLIP team (Cleft Lip & palate Infant Parent)

Published in: BMC Pediatrics | Issue 1/2020

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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 <.
Literature
1.
go back to reference Martelli D, Coletta R, Oliveira EA, Swerts MSO, Rodrigues LAM, Oliveira MC, Martelli H. Association between maternal smoking, gender, and cleft lip and palate. Braz J Otorhinolaryngol. 2015;81(5):514–9.CrossRef Martelli D, Coletta R, Oliveira EA, Swerts MSO, Rodrigues LAM, Oliveira MC, Martelli H. Association between maternal smoking, gender, and cleft lip and palate. Braz J Otorhinolaryngol. 2015;81(5):514–9.CrossRef
2.
go back to reference Wehby G, Cassell CH. The impact of orofacial clefts on quality of life and healthcare use and costs. Oral Dis. 2010;16:3–10.CrossRef Wehby G, Cassell CH. The impact of orofacial clefts on quality of life and healthcare use and costs. Oral Dis. 2010;16:3–10.CrossRef
3.
go back to reference Tillman KK, Hakelius M, Höijer J, Ramklint M, Ekselius L, Nowinski D, Papadopoulos FC. Increased risk for neurodevelopmental disorders in children with orofacial clefts. J Am Acad Adolesc Psychiatry. 2018;57:876–83.CrossRef Tillman KK, Hakelius M, Höijer J, Ramklint M, Ekselius L, Nowinski D, Papadopoulos FC. Increased risk for neurodevelopmental disorders in children with orofacial clefts. J Am Acad Adolesc Psychiatry. 2018;57:876–83.CrossRef
4.
go back to reference Brand S, Blechschmidt A, Müller A, Sader R, Schwenzer-Zimmerer K, Zeilhofer HF, Holsboer-Trachsler E. Psychosocial functioning and sleep patterns in children and adolescents with cleft lip and palate (CLP) compared with healthy controls. Cleft Palate Craniofac J. 2009;46(2):124–35.CrossRef Brand S, Blechschmidt A, Müller A, Sader R, Schwenzer-Zimmerer K, Zeilhofer HF, Holsboer-Trachsler E. Psychosocial functioning and sleep patterns in children and adolescents with cleft lip and palate (CLP) compared with healthy controls. Cleft Palate Craniofac J. 2009;46(2):124–35.CrossRef
5.
go back to reference Habersaat S, Monnier M, Peter C, Bolomey L, Borghini A, Despars J, Pierrehumbert B, et al. Early mother-child interaction and later quality of attachment in infants with orofacial cleft compared to infants without cleft. Cleft Palate Craniofac J. 2013;50(6):704–12.CrossRef Habersaat S, Monnier M, Peter C, Bolomey L, Borghini A, Despars J, Pierrehumbert B, et al. Early mother-child interaction and later quality of attachment in infants with orofacial cleft compared to infants without cleft. Cleft Palate Craniofac J. 2013;50(6):704–12.CrossRef
6.
go back to reference Montirosso R, Fedeli C, Murray L, Morandi F, Brusati R, Perego G, Borgatti R. The role of negative maternal affective states and infant temperament in early interactions between infants with cleft lip and their mothers. J Pediatr Psychol. 2012;37(2):241–50.CrossRef Montirosso R, Fedeli C, Murray L, Morandi F, Brusati R, Perego G, Borgatti R. The role of negative maternal affective states and infant temperament in early interactions between infants with cleft lip and their mothers. J Pediatr Psychol. 2012;37(2):241–50.CrossRef
7.
go back to reference Despars J, Peter C, Borghini A, Pierrehumbert B, Habersaat S, Müller-Nix C, Ansermet F, Hohlfeld J. Impact of a cleft lip and/or palate on maternal stress and attachment representations. Cleft Palate Craniofac J. 2011;48:419–24.CrossRef Despars J, Peter C, Borghini A, Pierrehumbert B, Habersaat S, Müller-Nix C, Ansermet F, Hohlfeld J. Impact of a cleft lip and/or palate on maternal stress and attachment representations. Cleft Palate Craniofac J. 2011;48:419–24.CrossRef
8.
go back to reference Bradbury E, Hewison J. Early parental adjustment to visible congenital disfigurement. Child Care Health Dev. 1994;20:251–66.CrossRef Bradbury E, Hewison J. Early parental adjustment to visible congenital disfigurement. Child Care Health Dev. 1994;20:251–66.CrossRef
9.
go back to reference Rey-Bellet C, Hohlfeld J. Prenatal diagnosis of facial clefts: evaluation of a specialized counselling. Swiss Med Wkly. 2004;134:640–4.PubMed Rey-Bellet C, Hohlfeld J. Prenatal diagnosis of facial clefts: evaluation of a specialized counselling. Swiss Med Wkly. 2004;134:640–4.PubMed
10.
go back to reference Dölger-Hafner M, Bartsch A, Trimbach G, Zobel I, Witt E. Parental reactions following the birth of a cleft child. J Orofac Orthop. 1997;58:124–33.PubMed Dölger-Hafner M, Bartsch A, Trimbach G, Zobel I, Witt E. Parental reactions following the birth of a cleft child. J Orofac Orthop. 1997;58:124–33.PubMed
11.
go back to reference Schlenker M, Maur M, Montoya P, Visier JP. L’annonce du diagnostic de malformation faciale: importance d’un travail de soutien psychologique auprès des familles et des équipes soignantes. Psychiatr Enfant. 1998;41:37–86. Schlenker M, Maur M, Montoya P, Visier JP. L’annonce du diagnostic de malformation faciale: importance d’un travail de soutien psychologique auprès des familles et des équipes soignantes. Psychiatr Enfant. 1998;41:37–86.
12.
go back to reference Schlenker M, Montoya P, Maury M, Visier JP. Le diagnostic de malformation faciale: intérêts de l’annonce anténatale. In: Mazet P, Lebovici S, editors. Psychiatrie périnatale. Parents et bébés: du projet d’enfant aux premiers mois de vie. Paris: PUF; 1998. p. 169–85. Schlenker M, Montoya P, Maury M, Visier JP. Le diagnostic de malformation faciale: intérêts de l’annonce anténatale. In: Mazet P, Lebovici S, editors. Psychiatrie périnatale. Parents et bébés: du projet d’enfant aux premiers mois de vie. Paris: PUF; 1998. p. 169–85.
13.
go back to reference Le Dref G, Grollemund B, Danion-Grilliat A, Weber JC. Towards a new procreation ethic: the exemplary instance of cleft lip and palate. Med Health Care Philos. 2013;16(3):365–75.CrossRef Le Dref G, Grollemund B, Danion-Grilliat A, Weber JC. Towards a new procreation ethic: the exemplary instance of cleft lip and palate. Med Health Care Philos. 2013;16(3):365–75.CrossRef
14.
go back to reference Endriga MC, Speltz ML. Face-to-face interaction between infants with orofacial clefts and their mothers. J PediatrPsychology. 1997;22:439–53. Endriga MC, Speltz ML. Face-to-face interaction between infants with orofacial clefts and their mothers. J PediatrPsychology. 1997;22:439–53.
16.
go back to reference Grollemund B, Guedeney A, Vazquez MP, Picard A, Soupre V, Pellerin P, Simon E, et al. Relational development in children with cleft lip and palate: influence of the waiting period prior to the first surgical intervention and parental psychological perceptions of the abnormality. BMC Pediatr. 2012a. https://doi.org/10.1186/1471-2431-12-65. Grollemund B, Guedeney A, Vazquez MP, Picard A, Soupre V, Pellerin P, Simon E, et al. Relational development in children with cleft lip and palate: influence of the waiting period prior to the first surgical intervention and parental psychological perceptions of the abnormality. BMC Pediatr. 2012a. https://​doi.​org/​10.​1186/​1471-2431-12-65.
17.
go back to reference Slade P, Emerson DJM, Freedlander E. A longitudinal comparison of the psychological impact on mothers of neonatal and 3 months repair of cleft lip. Br J Plast Surg. 1999;52:1–5.CrossRef Slade P, Emerson DJM, Freedlander E. A longitudinal comparison of the psychological impact on mothers of neonatal and 3 months repair of cleft lip. Br J Plast Surg. 1999;52:1–5.CrossRef
18.
go back to reference Munro IR. A description of craniofacial anomalies: the mechanism and rationale of surgery. In: Eder R, editor. Cranio-facial anomalies, psychological perspectives. New York: Springer-Verlag; 1995. Munro IR. A description of craniofacial anomalies: the mechanism and rationale of surgery. In: Eder R, editor. Cranio-facial anomalies, psychological perspectives. New York: Springer-Verlag; 1995.
19.
go back to reference Murray L, Hentges F, Hill J, Karpf J, Mistry B, Kreutz M, Woodall P, et al. The effect of cleft lip and palate, and the timing of lip repair on mother-infant interactions and infant development. J Child Psychol Psychiatry. 2008;49:115–23.PubMed Murray L, Hentges F, Hill J, Karpf J, Mistry B, Kreutz M, Woodall P, et al. The effect of cleft lip and palate, and the timing of lip repair on mother-infant interactions and infant development. J Child Psychol Psychiatry. 2008;49:115–23.PubMed
20.
go back to reference Stein REK, Riessman CK. The development of an impact-on-family scale: preliminary findings. Med Care. 1980;18:465–72.CrossRef Stein REK, Riessman CK. The development of an impact-on-family scale: preliminary findings. Med Care. 1980;18:465–72.CrossRef
21.
go back to reference Stein REK, Jessop DJ. The impact on family scale revisited: further psychometric data. J Dev Behav Pediatr. 2003;24:9–16.CrossRef Stein REK, Jessop DJ. The impact on family scale revisited: further psychometric data. J Dev Behav Pediatr. 2003;24:9–16.CrossRef
22.
go back to reference Williams AR, Piamjariyakul U, Williams PD, Bruggeman SK, Cabanela RL. Validity of the revised impact on family (IOF) scale. J Pediatr. 2006;149:257–61.CrossRef Williams AR, Piamjariyakul U, Williams PD, Bruggeman SK, Cabanela RL. Validity of the revised impact on family (IOF) scale. J Pediatr. 2006;149:257–61.CrossRef
23.
go back to reference Tauber M, Boulanouar K, Diene G, Çabal-Berthoumieu S, Ehlinger V, Fichaux-Bourin P, Molinas C, et al. The use of oxytocin to improve feeding and social skills in infants with Prader–Willi syndrome. Pediatrics. 2017;139(2):e20162976.CrossRef Tauber M, Boulanouar K, Diene G, Çabal-Berthoumieu S, Ehlinger V, Fichaux-Bourin P, Molinas C, et al. The use of oxytocin to improve feeding and social skills in infants with Prader–Willi syndrome. Pediatrics. 2017;139(2):e20162976.CrossRef
24.
go back to reference Re JM, Dean S, Mullaert J, Guedeney A, Menahem S. Maternal distress and infant social withdrawal (ADBB) following infant cardiac surgery for congenital heart disease. World J Pediatr Congenit Heart Surg. 2018;9(6):624–37.CrossRef Re JM, Dean S, Mullaert J, Guedeney A, Menahem S. Maternal distress and infant social withdrawal (ADBB) following infant cardiac surgery for congenital heart disease. World J Pediatr Congenit Heart Surg. 2018;9(6):624–37.CrossRef
25.
go back to reference Smith-Nielsen J, Lonfeldt N, Guedeney A, Skovgaard VM. Implementation of the alarm distress baby scale as a universal screening instrument in primary care: feasibility, acceptability, and predictors of professionals’ adherence to guidelines. Int J Nurs Stud. 2018;79:104–13.CrossRef Smith-Nielsen J, Lonfeldt N, Guedeney A, Skovgaard VM. Implementation of the alarm distress baby scale as a universal screening instrument in primary care: feasibility, acceptability, and predictors of professionals’ adherence to guidelines. Int J Nurs Stud. 2018;79:104–13.CrossRef
Metadata
Title
The impact of having a baby with cleft lip and palate on parents and on parent-baby relationship: the first French prospective multicentre study
Authors
Bruno Grollemund
Caroline Dissaux
Pascale Gavelle
Carla Pérez Martínez
Jimmy Mullaert
Toni Alfaiate
Antoine Guedeney
CLIP team (Cleft Lip & palate Infant Parent)
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Pediatrics / Issue 1/2020
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-020-02118-5

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