Cleft Lip and Palate

Emotional impact and support

Finding out that your baby has a cleft lip and/or palate can be a shock for parents and the ongoing experience may be emotional. There can be many challenges for new parents in this situation including feelings of guilt, post-natal depression, getting used to the way your baby looks, and issues with feeding and treatment for the cleft. A child born with a cleft lip and/or palate will be cared for by a regional cleft specialist team and will undergo operations for lip and/or palate repair. He or she is also likely to receive lots of dental treatment and speech and language therapy. Throughout the child’s infancy, childhood and adolescence there will be many clinic and hospital appointments as well as meetings with different health professionals from the cleft service team.

Families who receive a diagnosis of cleft lip and/or palate should be contacted by a Clinical Nurse Specialist (CNS) within 24 hours of the diagnosis. The CNS is usually the first point of contact and provider of information throughout all of the care the child receives, including giving information about support services. However, the other health professionals who provide care for the child may also refer parents to a relevant professional or local support group.

Most of the families we spoke to found a good level of support amongst their own family and friends but they also acknowledged more specific support from health professionals working in the cleft service. 
There are many ways in which parents can be supported in caring for their child. As well as formal care from health professionals, more informal care and support can be accessed by contacting other parents via the Cleft Lip and Palate Association. CLAPA has trained parent contacts for one-to-one communication as well as organised parent contact groups and social media networks such as CLAPA Facebook pages and the Adult Voices network (a Facebook based forum for adults born with cleft).
Some parents find the impact of caring for a child born with a cleft lip and/or palate to be overwhelming. It is a very emotional process and parents may become depressed. Most specialist cleft teams have a clinical psychologist who can offer more specific support to families as well as to adults who themselves have a cleft lip and/or palate. However, some of the families who believe they would have benefited from psychological support did not know they could get this help from the cleft service. 
Not all parents felt they needed support from others following the diagnosis or birth of a child with cleft. Some parents actively chose not to contact other parents in similar situations simply because their children had also been born with a cleft. Parents also noted that they needed time to get to know and live with their child before feeling ready to join in with support groups.

(Also see: Diagnosis of cleft and impact on pregnancy’ and ‘Cleft treatment pathway’).

Last reviewed June 2017.

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