The impact of a diagnosis of cleft on the pregnancy

Learning that your child will be born with a cleft lip can be a shock for parents. It can be difficult to understand what having a child born with a cleft will mean: what will the child look like, how will he or she feed and what treatment will he or she need? Many parents and families look for information on the internet when their baby receives a diagnosis of a cleft lip. However they can be overwhelmed by the pictures and stories of other families that they find.

There is also a great deal of uncertainty: the 20 week scan can only reliably detect that a baby has a cleft lip. However, further scans and genetic tests are sometimes offered at 20 weeks to see if there are any major chromosomal problems such as Down’s syndrome, Patau’s syndrome, and Edward’s syndrome.

Receiving a diagnosis at the 20 week scan can give parents a period in which to adjust to the prospect of having a child born with a cleft lip and/or palate. Although this can cause distress during pregnancy most parents we spoke to believed that the early diagnosis gave them time to prepare emotionally and practically. However support is available through the Cleft Lip and Palate Association (CLAPA) or locally through your cleft lip and palate service team.

There are also opportunities to meet other families expecting a child born with a cleft, or who have a child receiving treatment for cleft. CLAPA organise parent support meetings and families can also email others directly through the CLAPA parent contact regional directory.

CLAPA Facebook pages are useful if there is not a parent support group in your area. When parents look at the CLAPA website they can see ‘before and after’ pictures showing that cleft lip can be closed. In most cases families receiving a diagnosis of a cleft lip at the 20 week scan will be visited by a clinical nurse specialist (CNS) within 24 hours. The CNS will talk about how the baby will be cared for after it is born and the treatment that is available through the NHS.

Christie was reassured by a visit from the Clinical Nurse Specialist (CNS) where she was guided through the information available online.

Age at interview 41

Gender Female

View profile

Michelle and Paul used the CLAPA website and forum pages and contacted other parents about their sons’ diagnosis of cleft and a CNS helped to prepare them for the birth.

Age at interview 33

Gender Female

View profile

The CNS will inform the families about the cleft service specialists that will be involved in their babies’ care. These include cleft surgeons, dentists, speech and language therapists, audiologists and sometimes, clinical psychologists.

The most important information after birth is how to feed the baby and when and how the cleft lip and palate will be repaired (See ‘Feeding a baby born with a cleft’ and ‘Cleft treatment pathway’).

If parents need to talk to someone about their feelings there are trained professionals who work within many of the teams (counsellor or clinical psychologist) that can offer emotional support to families. The CNS will know if there is emotional support in your area and will be able to arrange an appointment for you.

In rare cases where there is a chance that the unborn baby will have a genetic syndrome, doctors and other health professionals may advise parents to consider abortion, which can cause families distress.

Tamsin and Andrew were glad to have found out about their son’s bilateral cleft lip and palate at the 20 week scan. The couple also had to consider the possibility that their son would be born with an undiagnosed genetic syndrome.

Age at interview 29

Gender Male

View profile

Becky and Mark’s son was diagnosed with a cleft lip at her 20 week scan. They were grateful for further scans so that they could prepare themselves for the implications of cleft lip and palate.

Most families are able to look back to when their child received a diagnosis of cleft and see their journey through the treatment pathway in a positive way.

Kerrey recalls how she came to terms with the diagnosis of her son’s cleft lip and how the good care that her son received put it in perspective.

Age at interview 27

Gender Female

View profile

(See also: ‘Emotional impact and support’, ‘Cleft treatment pathway’).