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Helping babies affected by congenital facial deformity

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The increase in cleft lip and palate specialist teams has created a fascinating new role for children's nurses.

The increase in cleft lip and palate specialist teams has created a fascinating new role for children's nurses.

Any prospective parent's main concern is for their baby to be 'normal and healthy', so a facial deformity can be devastating. Nurses like Sue Butcher, cleft lip and palate nurse specialist at the Queen Victoria Hospital in West Sussex, can help parents come to terms with such an eventuality.

'To be told that your baby is not 'perfect' can be very traumatic for parents. Although I cannot take away the worry of the condition, by informing and supporting them I can take away the worry of the practicalities,' says Ms Butcher.

After working as a midwife and a paediatric nurse on a plastics and burns ward, she took her current role five years ago. 'When families ask me how I found my job, I tell them that the job found me. Having started as a specialist feeding nurse, it has now evolved into a full-time role.'

Ms Butcher is now one of five full-time specialist cleft lip and palate nurses in the South Thames area. The role was created after a 1998 audit identified inadequacies in cleft lip and palate services and the government made it a national priority to commission specialised services. The Clinical Standards Advisory Group (CSAG) recommended services should be concentrated in a small number of centres, with a specialist multidisciplinary team including cleft surgeons, orthodontists, speech and language therapists, clinical psychologists and nurses.

'This was important because it was the first time nurse specialists were to be part of the team,' emphasises Ms Butcher. 'There are increasing opportunities for paediatric nurses in this field, and every specialist cleft service in the UK includes nurses. There are nine cleft teams in the UK and hopefully this number will grow.'

Ms Butcher is involved as soon as cleft lip and/or palate is diagnosed. 'I often receive antenatal referrals because, although you can't detect a cleft palate, a cleft lip can be detected prior to birth. I contact the parents and arrange to meet them to provide them with up-to-date information, and to discuss treatment options. I can also put them in touch with other families and the Cleft Lip and Palate Association [CLAPA], with whom I work very closely.'

Because they cannot suck effectively, a major difficulty for babies with a cleft palate is breast feeding. An important part of Ms Butcher's job is to advise and support the mother, and help to create a feeding plan.

'Local research showed that babies with a specialist feeding plan tended to thrive better than those without,' she explains. 'Also, when a baby is not perfect the issue of breast feeding can become even more important. I adopt a 'never say never' attitude because although it is difficult, contrary to what some mothers are told it is not impossible. I have to be truthful and realistic but I am there to help them make choices and support their decisions.'

Parents face difficult decisions regarding surgery. 'Cleft lips can be repaired at three months, and cleft palates at six months. Although parents may be keen for babies to have surgery when they are born, by the time they are a few months old they have mixed feelings because they love their child as they are and don't want to change him or her. It can take them time to adjust to the idea.'

If a cleft lip is diagnosed during pregnancy, Ms Butcher keeps in contact with the family, and visits them one month before the baby is due, to create a feeding plan. In line with national standards, when a baby is born with a cleft palate and referred to the team Ms Butcher sees the family within 24 hours. She does pre-op and post-op home visits and follows the baby through surgery.

Parents often worry that their child will be picked on by others. 'The fear that their child will be bullied is very real for parents. So we run bullying workshops. We have an on-call service so parents know that they can reach us at any time if they have any questions or need some support.'

Approaching parents properly upon diagnosis is vital. 'There was an incident where a couple had been for an ultrasound scan and then been referred for another scan,' recalls Ms Butcher. 'It was only when they were travelling to the next appointment that they read in the referral letter that they had a cleft baby. Naturally it came as a great shock because nobody had told them. If I'd been called I could have helped explain what was happening.'

Ms Butcher has presented at the Cranial and Facial Society's conference and has received an exceptional service award from the hospital after being nominated by a family. But it is the many letters of thanks from parents that mean the most.

'All babies are gorgeous and cleft babies are no exception. It is important to treat them normally so they can develop into normal, healthy children with the same opportunities as any other child: they could be dancers, singers, or even the future prime minister.'

How do I become a cleft lip and palate nurse specialist?

This could be for you if: you are interested in working with babies and their families, teaching, and do not mind driving, because the job involves a lot of home visits.

You need to be good at: Organising your own workload, remaining calm under pressure, working autonomously as well as part of a team, and keeping up to date with the latest research.

You need to have: a paediatric nurse or health visitor qualification, some community experience and preferably some experience of plastics nursing.

You don't need to have: a specific cleft qualification - you can complete a level 3 course in cleft lip and palate nursing, incorporating speech and language therapy and surgical repair, after taking a job.

Other similar jobs you could consider: paediatric community nursing, burns and plastics nursing, other specialist paediatric roles.

Where to find more information: see CLAPA website at www.clapa.com and the Craniofacial Society at www.cfsgb.org.uk.

VOL: 102, ISSUE: 6, PAGE NO: 38

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