Cleft treatment for adults
Adults born with a cleft lip and/or palate may require ongoing treatment despite having undergone surgery as children, teenagers and young adults. The healthcare of...
Cleft lip and/or palate and communication with healthcare professionals
Having a child born with a cleft lip/and or palate means you will be in contact with a wide range of health professionals in different healthcare settings. This contact may start prenatally (before birth) if the diagnosis is made by the sonographer (person doing the ultrasound scan) during a scan and will continue throughout the ‘cleft treatment pathway‘ as your child is treated.
Many different health professionals work within the UK cleft service: these can include clinical nurse specialists (CNS), paediatricians, cleft surgeons, speech and language therapists, clinical psychologist, orthodontists (specialist dentists who correct irregular teeth), paediatric dentists and audiologists (a specialist who works with those who have poor hearing).
The amount of contact with cleft health professionals will depend on the type and severity of the cleft your child has (unilateral or bilateral cleft lip and/or palate), the way the child develops physically and socially and also the way he or she looks and speaks. In the UK children born with a cleft are monitored and treated within the cleft service until they reach 21, and further treatment is available throughout adulthood if necessary.
It is common for families to develop close and trusting relationships with the health professionals who look after them and these relationships can start before birth. The first point of communication is usually with the sonographer when the diagnosis is made (usually at the 20 week scan).
Some of the families we spoke to believed that the diagnosis and communication of their child’s cleft had been handled badly. For example, they were unhappy with the ‘matter of fact’ way in which sonographers broke the news to them if a cleft lip was detected during a routine scan (see ‘Getting the news of a diagnosis of cleft’). However, it is important to understand that sonographers are not core members of the specialist cleft service and may not know very much about cleft lip and palate.
However, once a diagnosis of cleft is made families are contacted by a clinical nurse specialist (CNS), usually within 24 hours of diagnosis, who will explain what a cleft is, the issues associated with it and also how it can be treated (see also ‘Late diagnosis of cleft’). A cleft palate is not usually diagnosed before birth but if a baby is born with a cleft palate a CNS will be available to inform and support families at this time.
Alison and Chris were visited by a Clinical Nurse Specialist after their son was born with a cleft and taken to special care. The couple found the nurse helpful and they felt well supported.
Kerrey found communicating with her family’s CNS very easy when she was at home with her son and said they always returned telephone calls promptly.
A more positive approach in communicating with health professionals was experienced by most families once a child with a cleft was born. In particular, families were very satisfied with the CNS and began to develop a trusting and friendly relationship with them. Furthermore, the nurse was often seen as the most approachable member of the team, a reliable source of information who also facilitated communication between families and the multidisciplinary team (MDT).
Rhiannon describes the visit she had on the ward from a CNS following the birth of her daughter. The CNS explained to Rhiannon how the care of her daughter would be delivered.
Millie and Michael were visited by a CNS soon after the birth of their son. They felt very relaxed with her and she was gave their son his first feed by bottle.
The CNS was in regular contact with Rhiannon and she was able to meet other members of the multidisciplinary team including the surgeon who repaired her daughter’s cleft palate.
Before any surgery takes place to begin to fix the cleft, parents will be invited to a multidisciplinary team (MDT) meeting. This meeting is where they can meet many, if not all, of the health professionals who will look after their child until he or she reaches adulthood.
The MDT meeting can be an overwhelming experience for some new parents and some felt that it was difficult to put across their point of view. They also found it difficult to see the point of a meeting to discuss treatment and other issues that could potentially be years away.
Millie and Michael felt daunted when they attended their first MDT meeting with many different health professionals discussing their sons’ future treatment.
However, over time most families were happy to meet the health professionals who would be looking after their child and trusting relationships did develop. Families gained confidence in asking questions and they became familiar with the medical language and procedures that their child would undergo.
Safiya felt she was able to ask questions of the surgeon and team treating her son and that this became easier as they went through the treatment process.
Mary Y and her husband were given the opportunity to speak to the surgeon who would be operating on their son, which they found very reassuring.
Many families were grateful to meet the team who will care for their child. Most parents were able to ask the questions they wanted to and felt part of the decision-making process in their childs’ care. Some families met the surgeon who would be operating on their child and said this was very reassuring.
Becky and Mark always felt involved in the decision making process when communicating with health professionals and felt confident in approaching their son’s surgeon.
When Della first met the MDT team about 8 weeks after her son was born with a cleft palate and Pierre Robin syndrome she knew what questions to ask. Having had time living with her son she knew what questions she wanted to ask the team about his treatment
Self-image and appearance with cleft
We spoke to 15 people aged between 17 and 65 years of age about their experiences of being born with a cleft lip and/or palate...