An investigation into infant feeding in children born with a cleft lip and/or palate in the West of Scotland.
Abstract: AIM: To investigate feeding practices in infants born with a cleft lip and/or palate (CLP) in the West of Scotland and the challenges that the parents of these children experienced especially in the first hours and months after birth. METHODS: A questionnaire involving a 'face-to-face' interview was completed with parents of cleft children under the age of 6 years with a cleft lip and/or palate attending the Oral Orthopaedic Prevention Clinic (OOPC). RESULTS: 90 questionnaires were completed and analysed. The incidence of breastfeeding in this study at birth was 54%. In comparison, the incidence of breastfeeding in Scotland nationally was 63% in the year 2000 and 70% in 2005 indicating a lower uptake of breastfeeding for this CLP population. Cleft type had a significant impact on whether the infant was breastfed (p<0.05), those with a cleft lip being more likely to be breastfed. Twenty-nine percent of cleft infants required the use of a naso-gastric tube (NGT) to assist feeding either in hospital during the days following birth or later when there were concerns about the infant's weight. Of these all but one had a CP+/- CL, (p< 0.001); 26% of parents reported that their infant had used a pre-surgical appliance; 70% rated the appliance highly in terms of aiding feeding. The help and support given by the cleft team, especially Specialist Cleft Nurses (SCNs), was rated as positive in over 95% of cases but was less positive for the non-cleft health care professionals. Parents found it difficult to find the right feeding method for their baby until they received input from the SCNs and only a minority of parents managed to establish a regular feeding pattern. CONCLUSIONS: This study recommends the employment of more SCNs and an improvement of the knowledge of non-cleft health care professionals.

Key words: Children, feeding, cleft lip/palate.
Article Type: Clinical report
Subject: Cleft lip (Risk factors)
Cleft lip (Care and treatment)
Speech therapists (Practice)
Prevalence studies (Epidemiology) (Usage)
Authors: Britton, K.F.M.
McDonald, S.H.
Welbury, R.R.
Pub Date: 10/01/2011
Publication: Name: European Archives of Paediatric Dentistry Publisher: European Academy of Paediatric Dentistry Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2011 European Academy of Paediatric Dentistry ISSN: 1818-6300
Issue: Date: Oct, 2011 Source Volume: 12 Source Issue: 5
Topic: Event Code: 200 Management dynamics
Geographic: Geographic Scope: United Kingdom; Scotland Geographic Code: 4EUUK United Kingdom; 4EUUS Scotland
Accession Number: 277106780
Full Text: Introduction

Orofacial clefts (OFC) are the most commonly occurring craniofacial defect with an average prevalence of 1.2/1000 live births [Mossey and Little, 2002]. Children born with an OFC have a high burden of care throughout their childhood. Most can expect at least one surgical intervention requiring general anaesthetic, speech therapy, dental and orthodontic treatment, and possibly psychological counselling associated with the appearance of their cleft.

The clinical consensus is that breastfeeding is the preferred choice for infant feeding. The WHO recommends exclusive breastfeeding for 6 months. Some 78% of women in England and 70% in Scotland now choose to breastfeed [Infant Feeding Survey, 2005]. However, this reduces to approximately 45% by six weeks. A limited range of studies have suggested that breast-feeding is possible in infants with OFC [Clarren et al., 1987; Lawrence, 1997]. The advocates of breastfeeding in these studies tend to be the specialist nurses or doctors directly involved in OFC infant care and mothers who are writing from personal experience. Further support for breastfeeding in CLP infants also comes from other authors [Danner, 1992; Biancuzzo, 1998; Crossman, 1998; Wilton, 1998]. Danner [1992] reported that 'successful breastfeeding helped normalise the infant to the family and that as well as encouraging normal physiological muscular involvement of the mouth and face, it benefits speech development, and provides protection against upper respiratory tract infections particularly otitis media'.

In Scotland there are around 100 infants born with cleft lip and/or palate (CLP) each year [CLEFTSiS Annual Report 2008, 2009]. Following the recommendations of the Clinical Standards Advisory Group report [CSAG, 1998] and the Scottish Needs Assessment Program reports [SNAP 1994, 1998] a managed clinical network (CLEFTSiS) for OFC services in Scotland was established in 2000. CLEFTSiS now co-ordinates and seeks to optimise cleft lip and palate care and outcomes through standard setting and audit [CLEFTSiS annual report 2006].

The West of Scotland OFC team is part of CLEFTSiS and covers a wide geographic area of the western part of Scotland reaching from Dumfries and Galloway in the south to the Western Isles in the north. The multi-disciplinary team comprises: Maxillofacial and Cleft Surgeons; Specialist Cleft Nurses (SCNs); Speech and Language Therapists (SLT); Ear Nose and Throat (ENT) Surgeons; Paediatric Dentists; Orthodontists; and Geneticists. The first member of the team to meet the family is normally the SCN who aims to visit the family in hospital within 24 hrs of the birth of the child. The family first meets the complete multi-disciplinary OFC team at the Royal Hospital for Sick Children (RHSC) in Glasgow within two months. Children are then referred on to the Oral Orthopaedic Prevention Clinic (OOPC) at Glasgow Dental Hospital and School for routine dental advice and prevention and speech and language therapy (if cleft of palate involved). Children are reviewed at the OOPC on a 4-6 monthly basis dependant on caries-risk assessment and the need for SLT. Lip repair is carried out at RHSC at approximately four months and palate repair by 12 months.

This study provides the first external audit of one part of CLEFTSiS activity in the West of Scotland. It focuses on the feeding methods, patterns, and habits of infants with OFC, paying particular attention to the incidence, prevalence, and duration of breastfeeding amongst the cleft population. The results are compared to national (Scottish) statistics where available and a recent survey published by the Cleft Lip and Palate Association [CLAPA, 2007] a voluntary organisation.

Materials and methods

Study subjects Study subjects were recruited at their routine examination appointment at the OOPC. This approach did not require an extra appointment for the parents and allowed a 'Face to Face' structured interview. All OFC children under the age of 6 years were eligible to take part in the study. Ethical approval was granted by the West Ethics Committee. A parental letter was sent 2-3 weeks before a child's appointment, inviting parents to take part in the study and to read the accompanying 'Parent Information Sheet'. On arrival at the OOPC the investigator, a Paediatric dentist, asked each parent to sign a consent form before taking part in the study. One copy of the Consent Form was given to a parent, one placed in their child's clinical records and the original was kept with the questionnaire. To achieve the aims of the study our goal was to interview approximately 100 parents of children born with OFC in the West of Scotland during the previous 5 years. The maximum number of children eligible for the study was 120.

Study Questionnaire The questionnaire was adapted from two questionnaire sources: one designed for potential research purposes; and one used by the SCNs at RHSC for internal audit. The questionnaire consisted of 51 questions covering: demographics, cleft type; feeding methods, interventions and habits; pre-surgical appliances; otitis media; support and advice given in the first year of the cleft infant's life; parents' experiences. Subjects were allocated a study number to ensure anonymity during analysis.

The full postcode was collected for each subject in this study to allow the degree of deprivation to be analysed using the Carstairs method [McLoone, 2004]. It has been long acknowledged that there are great differences between the health of those living in areas of high deprivation and those in areas of low deprivation; the latter having significantly less morbidity and higher life expectancy. Historically, the Carstairs score and deprivation categories have been the most commonly used measures of deprivation in relation to health and disease within Scotland. These were first described in 1981 and revised in 1991 [Carstairs and Morris 1991]. The census information used to derive the Carstairs score includes factors such as: overcrowding; male unemployment; low social class; and patterns of car ownership. The Carstairs score is calculated by combining these variables for an area, usually a postcode sector, and appropriately weighting them.

There are almost 1,000 postcode sectors in Scotland with an average population of 5,000. The deprivation scores for postcode sectors are restructured into seven deprivation categories giving Depcat scores which range from Depcat 1 (the most affluent) to Depcat 7 (the most deprived). The questionnaires were completed between April 2006 and May 2007 following piloting within the department.

CLP annotation The CLP types were recorded as unilateral cleft lip only (UCL), bilateral cleft lip only (BCL); unilateral cleft lip and palate (UCLP), bilateral cleft lip and palate (BCLP), and isolated cleft palate (CP). The percentage occurrence of each cleft type was calculated.

Statistical Analysis Observational statistics were used for the majority of results and the SPSS[R] package for Windows[R] (version 14) used to collate and analyse results. Where comparisons and significant differences were explored Chi square tests were carried out and p values were generated. Significance was reported at the 5% level. Content analysis was carried out on the qualitative data.

Results

Questionnaires were completed for 90 of the potential 120 study subjects identified from birth data. Seventeen subjects failed to attend for examination during the study timeframe and one family refused to take part due to time pressures on the day of appointment. Thus the study participation rate was 88%.

Demographics Of the infants 51% were male and 49% were female; 97% of the infants were born at 36 weeks or over and only one case was a twin. First born were 39%, 40% second born and only 4.4% were from 4th and 5th higher birth orders. All but one study subject were born in West and Central Scotland. Isolated CP accounted for the majority of the OFC present (48%) followed in decreasing numbers by UCLP (23%), UCL (17%) and BCLP (12%).

The ages of the subjects at the time the questionnaires were completed were as follows: 0-1 year (11%); 1-2 years (20%); 2-3 years (17.8%); 3-4 years (11.9%); 4-5 years (15.5%); 5-6 years (23.8%).

The most common age ranges of the mothers were 25-30 years (31%) and 31-35 years (29%). Only one mother was over 40 years of age. There was no significant relationship between cleft type and mothers' age.

Analysis of the deprivation category (Depcat) scores showed that compared to national figures (Table 1) more of the cleft study population were represented in the four most deprived categories (4-7) and less in the three least deprived categories (1-3). However numbers in the study population were too small to allow valid statistical analysis.

Timing of diagnosis Only 13% of mothers had an antenatal diagnosis of a cleft. The arrival of the cleft team within 24 hours after a diagnosis occurred in 52% of study cases. By three days after diagnosis 90% of cases had been seen.

Feeding methods, interventions and habits The prevalence of breastfeeding on the first day was 64%. After 1 week this had dropped to 49% and by 6 weeks to 30%. Only 13% of all subjects were breastfed for 6 months or more (Table 2).

Breastfeeding and cleft type 80% of the mothers who had a child with a CL breastfed from the first feed and 67% of these continued for 6 months or more. The prevalence of breastfeeding over time in the other cleft types is shown in Table 3. The prevalence of breastfeeding at 6 weeks in infants with cleft palate was significantly lower than that of infants with cleft lip only (p<0.005).

Feeding difficulties Only 10% of parents reported no problems during feeding (5 breastfed CL infants, 1 breastfed CP, 2 bottle-fed CP); 68% of parents had problems with the length of a feed and 46% of those stated that feeds lasted longer than an hour. A majority of infants (70%) experienced fluid coming down the nose and 52% had excessive air intake with colic.

In 29% of cleft infants assisted feeding via a naso-gastric tube (NGT) was required either in hospital during the days following birth or later when there were concerns about an infant's weight. Significantly more infants with a CP+/-CL required an NGT compared to CL only infants (p<0.001). NGT feeding in this study was not associated with supplementary feeding at the time of surgery.

Only 3% of all mothers in this study reported that they had established a regular feeding pattern after 48 hours. Some 48% established feeding patterns after 1 month, 29% took longer than a month and 20% never established a regular feeding pattern.

Some 47 of the 90 mothers (52%) decided to change their method of feeding from breastfeeding because of their child's cleft. And 71% changed their method after the initial feed or within days of the first feed with 81% of these mothers changing to using formula milk and a bottle. Many of the parents said that feeding became less challenging once they had the correct bottles and teats, but only really became easier after surgery.

High caries-risk feeding habits Only one parent said they put sugar in their baby's feed, however 33% of parents put liquids other than milk in the bottle, 'juice' (17%) being the most common and 87% of infants received a bottle just prior to their night time sleep. The age at which the infants stopped receiving a bottle at night was not a question in the original questionnaire but it emerged that of the 66 parents who did volunteer the information some 65% had a bottle at night until they were a year old with 23% continuing night time bottle feeds until the age of 2 years and 15% continued on demand breastfeeding at night until age 2 years.

Otitis media 34% of parents said their child had suffered from ear or chest infections and 19% believed that these had interfered with feeding. Half (10/20) of infants with a UCLP had an early experience of ear or chest infections compared with 20% (3/15) of CL infants. However study numbers were too small to allow valid statistical analysis.

Pre-surgical appliances Pre-surgical appliance were used by 26% of infants representing 72% of the BCLP and UCLP cases in this sample. Nearly 70% of the parents rated the appliances with a high score of 4 or 5 and were happy with the 'improved feeding and cosmetic results'. However, 50% had difficulties with the appliances especially the strapping tape.

Parental experiences The parents were asked for their comments about their personal experiences regarding: immediate support from the cleft team; the support and care from non-cleft health care professionals; and meeting the multidisciplinary cleft team at subsequent hospital appointments. Favourable, unfavourable and mixed comments are listed under relevant headings below.

Support from specialist cleft nurses The help and support given by the cleft team especially the SCN was positive in over 95% of cases:

"The Cleft Nurses were absolutely fantastic-wouldn't have coped or survived without them"

"They were really good, very supportive, lots of information, things happened quickly

"Cleft nurses--absolutely brilliant--couldn't explain enough--good home contact on phone"

Support from non-cleft health care professionals

"Doctors and nurses no advice, no reassurance"

"It was difficult to get answers out of the Doctors (in maternity hospital)"

"The ordinary nurses didn't really help... the hospital needs to be more pro-active"

"The nurses were adamant I could breastfeed but I couldn't"

"CP had been identified at 6.00 in the morning, got up to breastfeed--one nurse said 'for goodness sake if you didn't want to breastfeed you only had to say'. I was upset because of diagnosis, when told (about cleft), left alone, no help with electric pump, no support with hand pumps ... lovely people but too busy. If you don't breastfeed they want nothing to do with you".

Meeting the cleft team This was mostly a positive experience.

"Surprised how many folk there ... not expecting such a big set up ... dark room ... you and wife and child sat in front, felt self conscious ...not sure who everyone is ... know main players, but in one sense reassuring, notes in one place so helpful"

"I would rather have specialists in one room ... never felt rushed, had a lot of questions always someone to answer ... sitting around a desk would be better"

"A bit like going for a job interview but they were friendly and all our questions were answered"

Discussion

The reliability of the parental responses could be questioned as about 50% of participants were recalling information from over three years previously. However in defence of the retrospective questionnaire most parents stated that their memories were still very vivid as it had been a particularly intense time for the family. Their comments revealed that for some the questionnaire was a cathartic experience.

Demographics The gender ratio found in this study was very similar to that of three other Scottish cleft studies which all found 46% of their study subjects were female and 54% male [Womersley and Stone, 1987; Clark et al., 2003; Britton and Welbury, 2010] demonstrating that the gender ratio of orofacial clefts in Scotland has remained remarkably stable for the last 35 years. The national UK-wide CLAPA survey in 2006 [CLAPA, 2007] reported a majority of UCLP/BCLP combined, however our study confirms the findings of the other above mentioned Scottish studies in finding that the most commonly occurring cleft type in the West of Scotland was CP.

Timing of diagnosis Prenatal detection of a facial cleft is low [Martin and Rose, 2004; Suresh et al., 2006] especially in low risk pregnancies. Only 13% of mothers in this study received an antenatal diagnosis which was significantly lower than the 45% reported in the UK wide CLAPA survey of 2006. This may be due to the higher percentage of infants with a CP only in this study as this is harder to detect antenatally [Clementi et al., 2000; Stoll et al., 2000; Cash et al., 2001; Sohan et al., 2001]. It is to be hoped that the recent increase in the availability of 3D scans and the introduction in 2009/2010 of routine 20 week scans in the West of Scotland will increase the rate of antenatal diagnosis and allow for more antenatal counselling for prospective parents.

Feeding methods, interventions and habits Breastfeeding rates in the cleft population appear to be lower than in the general population. One small study by Trenouth and Campbell [1996] found that of 25 mothers who attempted to breastfeed, only 52% were successful. The national comparator figures for this study were the Infant Feeding Practices [2000] and Infant Feeding Survey [2005] as the study infants were born between 1999 and 2006. The incidence of breastfeeding in this study at birth was 54% a lower rate than the national figures of 63% in 2000 and 70% in 2005. At one week, 49% of the cleft infants were receiving breast milk which is more comparable to the national levels of 50% and 57% in 2000 and 2005 respectively. At six weeks the figure for cleft infants was 30% compared with 40% (2000), and 44% (2005) in Scotland. By six months the figure for infants with clefts was 13%, down to almost half the national rate of 24% (2000 and 2005). The lower rate of breast-feeding amongst the study population was to be expected, given the high numbers of CP subjects in this study.

A critically important member of the multidisciplinary cleft team with regard to establishing and maintaining an effective feeding regime is the SCN. The timing of the arrival of the these nurses in this study compares very favourably with the CLAPA survey [2007] where only 27% were seen within 24 hours, 21% within 48 hours and it took 1 month before 87% of cases were seen in the CLAPA study.

It is unknown whether all the children were seen by the SCNs before discharge from hospital, as information on the timing of their discharge was not collected. However a majority were seen within 3 days of birth and, anecdotally, the remaining 10% involved the late identification of a submucous CP.

During the time period of the questionnaire there was only one full time equivalent SCN for the whole of the West of Scotland, a large geographical area, yet nearly all the parents commented on the effect that the SCNs 'were always available by telephone'. The previous parental comments suggested that the maternity units were understaffed but the majority of study parents agreed that it was the roles and actions of individuals that contributed either to a good or bad experience for them.

Feeding difficulties Feeding difficulties in infants with CLP have been widely reported in the literature [Reid et al., 2006; Maseri et al., 2007; Reid et al., 2007; Beaumont, 2008] and one of the most pressing concerns for parents is the establishment of a successful feeding method [Clarren et al., 1987; Maseri et al, 2007]. The CLAPA survey of 2007 reported that 70% of mothers had established successful feeding patterns within 24 hours after birth yet in this study only 3% had established a regular pattern after 48 hours. This is a large and significant discrepancy.

A possible contributory factor to the problems found in our study could be the lower rate of antenatal diagnosis (13%) compared with the CLAPA survey rate of 45%, giving parents less time to assimilate all the information about having a baby with a cleft including the potential feeding difficulties. The lack of supplies of bottles and teats in hospitals appears to be similar in both surveys and lack of knowledge by nursing staff on the wards and health visitors appears to be a common complaint. Alternatively, the results could be reflective of the different methods used in the two studies. The CLAPA survey was a postal questionnaire whereas this study involved a personal interview giving the mothers the opportunity to be more expressive than is possible on paper.

Caries risk in cleft infants Over the last 20 years, many studies have found a greater incidence of caries in cleft children [Johnsen and Dixon, 1984; Dahllof et al., 1989; Ishida et al., 1989; Bokhout et al., 1997; Lin and Tsai, 1999; Chapple and Nunn, 2001; Bian et al., 2001; da Silva Dalben et al., 2003; Kirchberg et al., 2004]. Although this study did not look at the actual caries rate of the infants in the sample, it was a concern that 31% of infants had habits that would promote development of early childhood caries.

Otitis media Cleft infants are more at risk of contracting both secretory and acute otitis media. No Scottish studies were found in the literature for comparison. There is only one reference to UK literature [Hart and Bain, 1989] which stated that 25% of children will have an episode of acute otitis media during the first 10 years of life. We can therefore only roughly gauge that the figure of 34% for this sample with ear infections may be high compared with the general population of the same age. The significantly higher proportion of UCLP infants experiencing ear infections compared with those with CL alone and the much higher prevalence of breastfeeding in this latter study group cohort confirms the findings of Aniansson et al. [2002] who reported a 'significant beneficial effect of feeding with breast milk on both secretory and acute otitis media'.

Pre-surgical appliances In this study sample 26% used a pre-surgical appliance and felt that they 'improved feeding' and aesthetics. This is perhaps surprising as the outcomes of a recent randomised controlled trial into the use of pre-surgical orthopaedics in babies with unilateral CLP showed that pre-surgical appliances had no effect on weight gain and resulted in a significantly higher burden on the parents than the control groups [Konst et al., 2004]. Most centres in the UK would now not routinely use these appliances. Perhaps the positive response from parents to the appliances mirrors a similar response during the CSAG survey where patient satisfaction was noted to be high despite poor outcomes [Williams et al., 2001].

Parental experiences This questionnaire evoked some difficult issues for a number of families but there were many positive experiences as well. Without doubt the parents welcomed the opportunity to voice their thoughts and recollections in the hope that the service can be improved for future families. We are very grateful to the parents for their time and honesty.

Conclusions

The recommendations of the study are to employ more Specialist Cleft Nurses in the West of Scotland and to improve the knowledge base of non-cleft health care professionals. With regard to the latter the specific areas that need to be addressed are: general knowledge and awareness of cleft conditions, their treatment, and outcomes; recognition that feeding difficulties may be due to an undiagnosed cleft; and knowledge of the availability and use of specialised feeding bottles for cleft infants. These recommendations would improve the proportion of parents having a positive experience in the initial hours and days following the birth of their child, which in turn, would have longer term beneficial effects for the child should patterns of breastfeeding be maintained beyond this initial period.

Acknowledgements

The participation of the families who took part in the study and the support of the West of Scotland Cleft team are gratefully acknowledged.

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K.F.M. Britton, S.H. McDonald and R.R. Welbury.

Department of Paediatric Dentistry, Glasgow Dental Hospital and School, Glasgow, Scotland.

Postal address: K. Britton, Dept Paediatric Dentistry, Glasgow Dental Hospital and School, 378 Sauchiehall Street, Glasgow, Scotland, G2 3JZ.

Email: karen.britton@nhs.net
Table 1: Comparison of cleft study Depcat scores
with national figures for Scottish children.

Depcat      Cleft Study   Cleft Study   Scotland
score         Number      percentage    (2001) %

1                5            5.7         9.0
2                6            6.9         16.8
3               20           23.0         24.3
4               17           19.5         22.3
5               14           16.1         12.3
6               12           13.8         9.4
7               13           14.9         5.8
Total           87            100         100
Missing *        3

Table 2: Prevalence and duration of
breastfeeding.

Duration of      Number   Percentage
Breastfeeding

Not applicable     32         36
1 day              14         15
1 week             17         19
6 weeks            15         17
6 months           12         13
Total              90        100

Table 3: Cleft type and percentage of
breastfeeding over time (CL=unilateral cleft lip;
UCLP=unilateral cleft lip and palate;
BCLP=bilateral cleft lip and palate; CP=cleft
palate).

Cleft   % did not    % at 1   % at 1   % at 6   % at 6
Type    breastfeed    day      week     week    months
CL          20         80       67       67       67
UCLP        53         48       27       14       0
BCLP        9          90       81       55       9
CP          40         60       46       20       7
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