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doi: 10.1111/scs.12048

Mothers experiences of feeding babies born with cleft lip

and palate
Nina Lindberg RN, MSc1 and Anna-Lena Berglund PhD, RNT, MSc Ed (Professor)2,3

Department of Plastic and Reconstructive Surgery, Oslo University Hospital, Oslo, Norway, 2Faculty of Health Sciences, Oslo and Akershus
University College of Applied Sciences, Oslo, Norway and 3Department of Nursing, Faculty of Social and Life Sciences, Karlstad University,
Karlstad, Sweden

Scand J Caring Sci; 2014; 28; 6673

Mothers experiences of feeding babies born with
cleft lip and palate
Cleft lip and palate (CLP) in newborns have implications
for feeding. It might impede the childs attempts to seal
around the nipple and to create intraoral pressure. Parents needed support and information about feeding after
birth. Mothers own experiences and how they coped
with the challenges related to feeding have not been
extensively studied. The aims of this study were twofold:
to describe the experiences of feeding for mothers of children born with CLP and to elucidate how the mothers
cope with the challenges related to feeding. A qualitative
descriptive method and phenomenographic analysis were
used to analyse the narratives. Twelve mothers of babies
with CLP were strategically selected and interviewed. A
semi-structured interview guide was used. Ethical
approval for the study was granted by the local ethical
committee. The findings resulted in two main categories
and five subcategories. The first main category, Being a
capable and good mother, included descriptions associated

Cleft lip and palate (CLP) are common birth defects (1).
In this study, CLP refer collectively to clefts of the lip,
clefts of the palate and clefts of both lip and palate. In the
country, approximately 120 children (1.9 per 1000 live
births) were born with an oral cleft (2). CLP in newborns
have implications for feeding. A cleft lip (CL) might
impede the childs attempts to seal around the nipple
when breastfeeding. A cleft palate (CP) might prevent the
baby from creating a necessary negative pressure (3). Different feeding difficulties were described by Reid et al. (4)
in a clinical cohort of newborns with CLP, CP and CL.
Correspondence to:
Nina Lindberg, Department of Plastic and Reconstructive Surgery,
Oslo University Hospital, NO-0027 Oslo, Norway. E-mail: nina.


with the mothers strong desire to do what was best for

the child and about how they experienced feeding. The
second main category, Coping with the challenges related to
feeding, included descriptions of what the mothers perceived as important in order to cope with the challenges
related to feeding; of how personal resources were used;
of the significance of the father and close family; and of
how healthcare professionals contributed. In conclusion,
mothers of children born with CLP were in need of individual information by healthcare professionals with
expertise, at the time of the diagnosis and until the feeding was manageable. Furthermore, the mothers personal
resources, the fathers and immediate family were of
major importance for the mothers to cope with challenges related to feeding.
Keywords: cleft lip, cleft palate, newborn, mother, feeding behaviour, breastfeeding, experience, father, coping,
Submitted 26 September 2012, Accepted 1 April 2013

They found that poor feeding skills were prevalent and

persisted in some of the babies up to 14 months of age.
The study showed that oral motor dysfunction, poor
feeding efficiency and feeding sequelae, such as nasal
regurgitation through the nasal cavity, were part of the
difficulties. In addition, they found significant association
between cleft conditions and feeding skills. Babies born
with CL were described as good feeders, and babies with
CP had most feeding difficulties. Furthermore, Garcez and
Giugliani (5) had studied the practice of breastfeeding and
found that babies born with CLP/CP had difficulties, while
babies born with CL breastfed to a great extent. When
breastfeeding was not an option, assisted feeding using
squeezable bottles was recommended because they appear
easier to use than rigid bottles (6). In the country, ninetyseven (96.6%) per cent of the infants in a cohort study
were breastfed at one month (7). The high percentage
indicated that mothers of babies born with CLP did not
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Feeding babies with cleft lip and palate

follow the norm when it came to feeding. Previous studies had found that parents of newborn babies with CLP
needed information and support in feeding (810). However, mothers own experiences of feeding their babies
had not been extensively studied. The aims of this study
were twofold: to describe the experiences of feeding for
mothers of children born with CLP and to elucidate how
they cope with challenges related to feeding.


were in the age of 2434 years. Nine out of twelve had

graduated from college and university, three from secondary school. All mothers were either on maternity
leave or studying. They were living together with the
father of the baby. Their babies were between three and
thirteen months old when the mothers were interviewed.
Birthweight of the babies was between 2.54.6 kg. None
of the babies were born with additional anomalies or
syndromes (Table 1).

Methodology and design

A qualitative method with a phenomenographic
approach was conducted by Marton (11) and Marton and
Booth (12) and is an accepted method in nursing
research (13). Phenomenography describes the qualitatively different ways in which people understand different aspects of the world and how they are informed of
that (11, 12). A central concept in phenomenography is
the second-order perspective, which is a response to the
question how (11), a distinction from what, which
describes the first-order perspective (12) and also
describes the interpretation of experiences. In phenomenography, the purpose is to tell of the perceived world
and describe how people understand it, that is, the second-order perspective (14).

The participants were selected from the attendance of a
class for families with newborn babies with CLP under
the direction of the department of the hospital. In line
with appointed inclusion and exclusion criteria, a variety of
informants with babies with different cleft types were
selected. After being informed by the nurse responsible
for the programme about the aim of the study and after
being given written and oral information, twelve mothers
were recruited and agreed to participate. The mothers

Data collection
Thematic interviews were carried out by one of the
researchers (NL) in the hospital or in the familys home
depending on their choices. An interview guide was used
focusing on open-ended themes such as breastfeeding,
bottle feeding, emotional reactions, the role of healthcare
professionals and coping. The participants were encouraged to describe their feelings and experiences as fully
and as deeply as possible. During the interview, they
were asked to give examples and to clarify. Two pilot
interviews were carried out before the interviewer could
strive to vary the focus of the phenomena under study
(11). The interviews took place during spring and winter
of 2010. The interviews lasted between 3060 minutes,
were digitally recorded and transcribed verbatim by the
interviewer (NL).

Data analysis
In phenomenography, a series of analytic steps are
described (11, 12). In this study, the analysis carried out
was inspired by Dahlgren and Fallsberg (15), modified by
om and Dahlgren (13). In the first step in the analysis process, familiarisation, the interviews were transcribed
verbatim and read thoroughly many times to get an overall impression and deep knowledge of the material. The

Table 1 Sociodemographic characteristics in children born with CLP and mothers experiences of feeding (n-12)
Age of

Sex of


Pre- or postnatal





Support in


Type of










2 days
2 week
12 week22 week12 week
16 week28 week
10 week
12 week
20 week
26 week


CLP= Cleft lip and palate; CL= Cleft lip; CP= Cleft palate; Week-= more than.
2013 Nordic College of Caring Science

(2 week)

(3 month)

(1 month)

(1 week)


N. Lindberg, A. -L. Berglund

second step involved compilation of answers from the informants to identify the most significant elements. In the
third step, condensation or reduction in the individual
answers, 714 statements related to how the mothers experienced feeding were identified. In the next steps, comparison and grouping, all statements were compared to find
differences and similarities. In order to have an overview,
the statements that described similarities of experiences
were first grouped into 14 themes, before being restructured into six subcategories. At the sixth step, labelling, the
subcategories were named to illustrate the content/core of
the categories. Finally, in the last step, contrasting, the subcategories were compared on an abstract level and were
grouped before two main categories emerged. Recurrent
discussions were held during the different steps of analysis
until agreement was obtained between the researchers.

This created opportunities for the reader to determine
the credibility, auditability, fittingness and logic of the study
(16). Pilot interviews were carried out in order to make
the interviewer (NL) comfortable with the interview situation and test the interview guide (17). The use of
quotations to illustrate the description of the categories
was also meant to increase credibility (13, 16). Auditability
was reached by following the different steps in the phenomenographic analysis process as closely as possible
(13, 18, 19). Fittingness depends to a large extent on its
degree of credibility according to Sandelowski (18), that
is, strategies used to determine credibility through
enhanced fittingness as well as purposeful sampling of

Ethical considerations
The study was carried out in accordance with ethical
principles and guidelines of human research (20). Informants received written and oral information about the

aim of the study and its design, as well as about voluntariness and confidentiality.

Two main categories and six subcategories emerged during the analysis. The first main category, Being a capable
and good mother, included the mothers various conceptions of the desire and effort they had made to feed the
baby. The first subcategory described the mothers need of
information and support and the lack of expertise in
healthcare professionals when it came to CLP and feeding.
The second subcategory included descriptions of the feeding process. Various conceptions of closeness to the child
were described in the third subcategory, while the fourth
consisted of descriptions related to how to do everything
correctly. The second main category, Coping with challenges
related to feeding, described what the mothers perceived as
important in order to cope with challenges related to
feeding. The first subcategory illustrated how the mothers
used their own resources, while the second subcategory
consisted of descriptions of how healthcare professionals
contributed to the coping process (Fig. 1).

Being a capable and good mother

Competence in feeding. The mothers reported feelings of
shock and great concern about feeding at the time of
diagnosis in pregnancy.
It was overwhelming because all thoughts came at
the same time what will she look like how can I
feed her how will others react?
Limited knowledge about CLP and feeding was
reported, especially the impact that the cleft might have
on respiration, swallowing, colic and leakage of milk
through the nose. We did not know anyone there is
no one we know who has a cleft so everything was
completely new. The mothers expressed a need of systematic follow-up by healthcare professionals with

Competence in feeding
Feeding the baby
Being a capable and good mother
Closeness to the baby
Doing the correct thing
Using own resources
Coping with the challenges related
to feeding

The behavior of healthcare


Figure 1 Mothers experiences of feeding the babies described in the relationship between the main categories and subcategories.
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Feeding babies with cleft lip and palate

expertise until feeding was established, and they were
confident in their situation. I was desperate to talk to
someone with expertise.
The mothers reported that healthcare professionals did
not have the necessary expertise to meet their needs.
They received various and inaccurate information about
breastfeeding. Some said that there is no problem to
breastfeed babies with cleft palate and another said it is
impossible. Lack of support in bottle feeding was also
reported. At the hospital they did not know how to use
the bottle so we found it out at home it was strange
that they did not know. The mothers reported that it
was stressful and confusing when different healthcare
professionals shared their ideas and suggestions of how
the mothers should feed the newborn.
It was tough I got different advice on every shift
and there were three shifts a day you do not
know who you should listen to you knew nothing
about it yourself. All I wanted was to go home to
find out on my own.
Feeding the baby. The health benefits of breastmilk were
stated by the mothers. Concerns about formula feeding
and the consequences it might have for the childrens
health in general in regard to abdominal pain and colic
were expressed.
The text on the formula box reads like on a pack of
cigarettes Warning! Breast milk is the best! Consult your healthcare provider before giving your
baby this!
Different experiences regarding breastfeeding of babies
with CL were reported by the mothers. On the one hand,
low expectations to succeed in breastfeeding and difficulties with latching on to the breast were described. On the
other hand, breastfeeding was quite easy despite of a
sucking pattern that was different compared with breastfeeding a sibling. Breastfeeding babies born with CLP/CP
were reported to be challenging because of difficulties
with latching on. Others reported long periods of sucking
at the breast. However, the babies with CLP/CP did not
get enough milk during breastfeeding, and the combination of breastfeeding and bottle feeding was a demanding
task. and when you saw that he just wanted the
breast and enjoyed breastfeeding and you knew that it
was not enough, it was more frustrating than satisfying.
Mothers who did not succeed in breastfeeding reported
emotional reactions such as loss and sadness the first
time after birth, while others did not suffer.
I have no sorrow because I had not breastfed
before I do not know what it is do not know
what I can miss so that was probably an advantage.
Feeding with a special bottle was described as uncomplicated and something they quickly learned. Others
experienced implementing bottle feeding as a long and
stressful process that lasted for 89 weeks.
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So I spent 2.5 hours giving him food and he

should be fed every 3 hours it was a lot of
back and forth and he was sent to the hospital
The focus on breastmilk was reported to influence the
mothers social lives. They felt limited, because they
needed special equipment and a suitable place to pump
and there has been a limit to how social I could be
it has not been compatible with the pump, I think. A
greater flexibility and a feeling of freedom were also
described. In that way it has been easier than breast
feeding my husband can feed her just as well as I do.
Stress levels were high in the mothers because they
were afraid of losing the milk or because they experienced low milk production. It increased almost nothing so I became more and more stressed maybe that
was why I just dropped out completely you become
exhausted. The act of expressing milk was described as a
hard, mechanical and low intimate activity.
My body is not designed for the mechanical thing.
When you pump it is quite hard in relation to a
childs mouth intimacy was missing in a way.
Closeness to the baby. When the mothers received the CLP
diagnosis in pregnancy, a feeling of insecurity related to
bonding with the child was expressed. When I realized
that I could not breastfeed him Will he get a bond to
me as a mother? On the one hand, the maternal feeling
came immediately after birth because bottle feeding was
not experienced as different from breastfeeding and the
newborn still maintain closeness to the mothers body.
Hes fine because he does not know about anything
else and he is close to me the way I would have done
except that I do not give him the breast. On the other
hand, the feeling of closeness to the baby came later.
It took some time before I felt any maternal
instinct me and my partner shared the feeding
task its one of the benefits, but may not give the
mom the mothers instinct, I think as when you
Being physically close to the newborn was facilitated
in other ways by the mothers when they were not
She has been sleeping with us and been very much
at my chest it was as near as she could get and
then you do that put aside everything else.
A sense of freedom was experienced by the mothers
when relatives fed the newborn. Others expressed the
importance of feeding the baby themselves. so it was
a bit strange at first when others wanted to feed her
it felt a bit sore and I wanted to do it myself.
Doing the correct thing. A strong desire to do what was
best for the baby, themselves and the family was
described by the mothers. Its obvious that he should


N. Lindberg, A. -L. Berglund

have my milk, it is the best! Despite great effort, it was

difficult to give priority to their own health by discontinuing pumping, because what was best for the baby
was in the end what was best for them.
So, even though I have been desperate and angry
and tired of pumping that has taken so much time
I think that he has benefited from it all I can give
him is good for me, too.
Others reported that the best solution was to reduce
the workload. Although it certainly would be best for
him to receive breast milk only it is best for our family
that he receives a combination.
The mothers expressed that it was important to explain
and defend their feeding choices in social contexts. An
uncertainty about how others react to the child and a
sense of being different were described.
I feel that I had to explain when I was feeding her
with the bottle I am sort of hormonal and vulnerable when out in public she cannot breastfeed
but it is breast milk!

Coping with the challenges related to feeding

Using own resources. The mothers reported that their own
resources and activity were important in the process of
coping with challenges related to feeding. With or without help from healthcare professionals they took control
over the situation.
From being completely paralyzed to be acting
here I actually have to do it myself Im certainly
not the person who is sitting there waiting I go
into action myself!
Life experience, career and motherhood were important in interaction with healthcare professionals with different attitudes than themselves. Standing up for their
own choices contributed to an increased confidence for
the mothers. You have to listen to others experiences
and listen to what caregivers say but you have to be
selective in taking the advice. To collect information
was reported as essential. Different social media was used
by some, while others preferred information in a dialogue with healthcare professionals and peers. I absorb
the information I can get. Its a way to cope and handle
it. The mothers reported that they had prepared for the
birth and feeding during pregnancy. This process created
predictability and a feeling of mastering.
Preparing myself has been the alpha and omega
for me Ive been able to prepare myself I have
asked and I have been able to get some answers.
Taking one thing at a time was meaningful to cope
with the challenges. I needed to sort things out then I
calm down so we take one thing at a time.
The contribution of the fathers of the newborns in
feeding decisions and practical conditions made it easier
for the mothers to cope with the challenges. He has

been very good in supporting when trying out breastfeeding and bottle feeding he sterilizes the equipment
and organizes. The sharing of the challenges also contributed to a team spirit. and the fact that we shared
sometimes he fed her and I washed up and that he
also took shifts it became a family project, simply. A
feeling of being equal appeared when the mothers
watched the fathers responding to the newborns signals.
She was so fond of her father he was at least as good
as me. Differences in the mothers own reactions compared with the fathers were reported. On one hand, a
feeling of distance and loneliness appeared. On the other
hand, the differences were understandable and something the mothers were familiar with. He did not really
understand why I thought it was hard but it does not
matter we do not understand everything, do we? Practical help and support from immediate family were of
great importance to the mothers. The most important
thing for me is that I have people around Im not
alone they are supportive and listen to my
The behaviour of healthcare professionals. Healthcare professionals who had an open attitude, showed willingness to
help and took a clear responsibility had a powerful
impact on the mothers coping process. I contacted the
healthcare center before birth to let them know that my
baby had a cleft. Great, she said I will get in contact
with the expertise and find out and they have been
just fabulous.
The mothers reported that it was important to receive
simple and specific information when the situation was
perceived as chaotic. Counselling by healthcare professionals was important when the mothers wanted to try
out breastfeeding. It contributed to acceptance in the
mothers who did not manage breastfeeding.
In a way, I knew in what direction it would go
though, it was good to get confirmation that I took
the right decision it was not something that I
When being encouraged and supported by healthcare
professionals, the mothers had a deeper understanding
for their own reactions and for how they responded to
the situation. I have received positive feedback on what
I have managed and its been good to see okay, if
Im tired there is a reason why.

The significance of being a capable and good mother was
a central finding in the study. The mothers strong determination and great effort to find the optimal nutrition
and feeding technique was obvious. According to Brown
et al. (21), good mothers were expected to place the
needs of the infant above their own, to be patient and to
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Feeding babies with cleft lip and palate

display love and care. Furthermore, Hjalmhult and Lomborg pointed out that mothers were stretching themselves to a critical level to succeed in motherhood (22).
This was in line with findings in the present study,
where the mothers struggled to do the right thing in
terms of trying out breastfeeding or to express breastmilk
to be able to feed the baby with breastmilk.
Schmied and Barclay (23) have described a strong conviction among mothers of healthy infant that breastfeeding was the best for the baby and that breastfeeding is
synonymous with being a good mother. The findings in
this study indicated that mothers reflected upon this
topic, but placed different values on it. Despite sadness
and loss, the mothers chose not to breastfeed without
describing themselves as poor mothers. This might indicate an adaptation to the situation. The mothers realised
that other conditions beside breastfeeding were important
for being a good and capable mother.
This study has found that different experiences of feeding could impact the maternal feelings towards the baby.
Maris et al. (24) had studied the interaction between
mother and child with the help of foreign situation to
see if the appearance of children born with CLP could
cause insecure attachment. They found some instability
for children with cleft palate during infancy, but concluded that most children showed a secure attachment at
two years of age. The impact that feeding might have on
maternal bonding should therefore be discussed when
support was given by healthcare professionals.
In line with previous studies (2527), the mothers in
this study reacted with great concern about feeding at
the time of diagnosis. Limited knowledge in the parents
about feeding after birth was found and had also been
described by Johansson and Ringsberg (9). This study
showed that counselling and support by healthcare professionals with competence in cleft care was of great
importance at the time of diagnosis and until feeding is
manageable. Despite good encounters with healthcare
professionals, the mothers received insufficient and conflicting information, which created uncertainty and irritation among the mothers. Previous studies had also found
that inconsistent information given to the mother by
healthcare professionals caused confusion and anxiety (9,
10). The mothers in this study preferred to leave the
maternity ward without necessary equipment, in order to
obtain information and try out feeding on their own.
Perhaps the mothers would have had a better feeding
experience and chosen a feeding method more quickly if
support had been given by competent healthcare
The lack of competence in healthcare professionals
which was found in the present study might be due to
little experience with babies born with CLP. According to
Benner, expertise is developed by being close to a field of
practice over time (28). In the country, babies with CLP
2013 Nordic College of Caring Science


are usually born at their local maternity hospital. They

are referred to one of two multidisciplinary teams
who are responsible for the treatment of the cleft after
birth. That means the families received support from
healthcare professionals with different and limited experience in CLP in the postnatal period, when feeding was
established. In Denmark and England, trained clinical
nurse specialists are responsible for the follow-ups of the
families through pregnancy and after birth (10, 29). This
way of organising the cleft care or a closer cooperation
between the local maternity hospital and the multidisciplinary team might contribute to a better follow-up of
feeding babies born with CLP.
The findings in this study added variations to previous
studies that relate feeding difficulties to cleft type (4, 5).
Among the mothers, no consensus was found that feeding in general or breastfeeding babies with CL was easy
and feeding babies with CLP/CP was a challenge. The
findings also indicated that feeding a baby with CLP
caused emotional reactions to being different. Furthermore, nutritional matters and different efforts seemed to
have an impact on the experienced challenges. Against
this background, it is important to have a broad approach
to feeding. The various experiences that have emerged
indicated that feeding babies born with CLP is a complex
process. There remains much research to be done before
the whole mechanism of feeding babies born with CLP
can be understood.
Another finding from the study was the burden of
pumping breastmilk. This was in line with Aniansson
et al. (30) who reported that the reasons why mothers
did not give breastmilk were the practical problems associated with pumping and a decrease in milk production.
Furthermore, they found that breastmilk fed babies born
with CLP had reduced incidents of secretory and acute
otitis media, although they had not been fully breastmilk
fed. Based on this and the well-known health benefits of
breastmilk (31, 32), the mothers should be supported
through the emotional and practical challenges to facilitate breastmilk feeding.
The mothers significance of being active and using
their own resources to cope with the challenges could be
described from the findings. The healthcare laws emphasise patients rights to be informed and involved in
designing their own health care (33). Therefore, it is
important for the caregivers to pay attention to the balance of power in the encounter with the mothers and to
avoid a paternalistic attitude.
Social support, especially from the fathers and close
family, was of great importance for the mothers when
coping with the challenges related to feeding. A previous
study by Baker et al. (34) found that high levels of social
support were predictive of less family impact, lower psychological distress and more positive adjustment to having a child with a craniofacial condition. The mothers in


N. Lindberg, A. -L. Berglund

the study highly appreciated all support in feeding from

the fathers. They gained strength by the feeling of being
equal as a parent, sharing the tasks and working together
through the challenges. The involvement of the fathers
in the care of the newborn was also essential for the
fathers to master fatherhood (35) and therefore important for healthcare professionals to draw attention to.
It may seem artificial to study the phenomenon of
feeding babies with CLP in isolation from other aspects of
maternal experience, because feeding is closely related to
other conditions in pregnancy and the postnatal period
for mothers. Notwithstanding that, when separating the
phenomenon of feeding, significant aspects could be
highlighted and an important insight into how twelve
mothers experience of feeding can contribute to a deeper
understanding, even if conclusions on behalf of the
entire population cannot be drawn.

experiences of coping with the challenges related to

feeding their babies.
Against this background, healthcare professionals
should involve the fathers in the feeding process and be
aware of the strong impact the mothers own resources
and network have on the coping process. The mothers
own feeding experiences can be the basis of the support
given by healthcare professionals with competence in
feeding babies born with CLP.
Further research is needed to investigate aspects of
feeding babies born with CLP.

The authors wish to thank the mothers for their participation in the study.

Author contribution
Conclusion and implication for practice
Mothers of children born with CLP were in need of
individual information and support by healthcare professionals with expertise in feeding at the time of the diagnosis and until feeding was manageable. Once the
diagnosis was known, concern about feeding was seen
in the mothers followed by a process of assessing, selecting and trying out different feeding methods to make a
feeding decision. The different experiences in the mothers and their emotional reactions to breastfeeding, bottle
feeding, breastmilk expression and the impact feeding
had on the maternal instinct were striking. Feelings of
being different and a need to explain their feeding
choices were seen. The mothers made great efforts with
the feeding aspects in order to be capable and good
mothers. They were active and determined and used
their own personal resources to cope with the challenges
related to feeding. The fathers participation in feeding
and care for the baby, and support from immediate family, were factors of major importance to the mothers

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Nina Lindberg contributed to the study conception and

design, data collection, data analysis and drafting the
manuscript. Anna-Lena Berglund contributed to the
study conception and design, data analysis and drafting
the manuscript.

Ethical approval
Permission to carry out the study was given in 2009 by
Head of the Department of Plastic and Reconstructive
Surgery, Oslo University Hospital, NO-0027 Oslo, where
the study was performed and from which the informants
were selected. The Norwegian Social Science Data Services and The Research Committee for Medical Research
Ethics for South Eastern Norway assessed and approved
the study, Diarie number S-09171a [6.2009.575].


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