Global team care

Multi-disciplinary Cleft Lip and Palate team of Lausanne, CHUV

Facial clefts (lip, lip and alveolus, with or without cleft of the palate) are also referred to as CLP. These are among the most common congenital anomalies in human.

One out of 700 newborns may have a cleft of the lip and/or palate.

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However frequent these anomalies may be, the fact that their baby may be affected will represent a shock and a major challenge for parents. Parents will be anxious about their child’s future, his/her physical as well as psychological development and well-being.

They know there will be esthetical and functional sequelae which will require complex treatments.

Prenatal diagnosis and its impact on future parents. 

The pediatric surgeon of the team, will be the first member of the team that parents will be in contact with. Sometimes very early, if prenatal diagnosis of a facial cleft has been made during a routine ultrasound examination. A well-organized consultation system has been set in our team, with monthly discussions between future parents and the surgeon.

These consultations aim at informing parents as thoroughly as possible, in order to somehow make them “experts“ in the field of facial clefting. But the primary goal is to relieve their anxiety and stress, explain that the anomaly is not a rare incidence, that it has adequate solutions etc… Too much information is not what we intend to give. The amount of information that parents need is variable and it is our responsibility to deliver it according to their real needs.

We know that parents, as soon as they have been informed of the diagnosis, will rush on the web and seek information. What they will see then is sometimes more disturbing than reassuring. We will not discourage them to surf on this ocean of informations, but we certainly want to channel their search, explain as precisely as possible the diagnosis that ultrasound investigation made possible.

One has to make it very clear to them what one can see, but also (and as important) what one does not see. It is important to give as much details as possible, but at the same time, downsize the future sequelae and importance of the surgery involved. Or at least, give them the right size of these sequelae and surgical solutions.

All parents experience a shock at being told of a prenatal diagnosis of a facial anomaly. However, if a member of the cleft team meets with them immediately, he/she will face disoriented, shocked future parents who are not ideally receptive for an exhaustive information. Stress and anxiety dominate their feelings. Retrospectively, parents have told us when questioned about the ideal timing of the first meeting after diagnosis, that the beat timing would be a few days (but no more than a week) after prenatal diagnosis.

Multi-disciplinary team care

We would like to introduce you to our multi-disciplinary team and discuss its organization and particularly its involvment in delivering the best treatment it can offer to your child. The team is devoted not only to your child’s, but also to your well-being. The CLP team consists of specialists working together with the aim of offering the best treatment possible to their patients, thanks to an optimal coordination of measures.

First of all, the team must gain the trust of parents and patients, and be ready to give them all the necessary information they need. Only a multi-disciplinary team will be able to assist parents and patients, and offer them efficient and optimal care, depending on medical priorities (objective factors) and personal expectations (subjective needs). The pediatric surgeon of the team, together with the orthodontist, will take care of the baby soon after his/her birth.

When a pre-natal diagnosis could be set, parents usually received information from the radiologist and the pediatric surgeon, and sometimes even from the psychologist of the team. However, when such an early diagnosis was not possible (as for instance in the case of a cleft of the palate without cleft of the lip), parents will have many questions regarding the future of their child.

Their first need is information. Although the internet may represent a useful source of information, direct and personal communication remains by far the best way to inform and reassure parents during this critical period.

Sans titre 54 The newborn may experience some difficulties in feeding. Often do we have to make a feeding plate in order for the baby to feed in a normal way, i.e., in a reasonable time and without reflux. tetee

Such a plate is very useful and helps the child until the surgical closure of the cleft.

The surgical closure of the cleft will have to be programmed on an individual basis; the procedures usually are performed during the first year of life. The timing and technique differ from center to center, and all surgeons do not agree on these matters. Later, the baby will be followed by his/her pediatrician, like all kids.

Children born with a facial cleft will be followed also by the cleft team, with a strict schedule and according to the child’s needs and wishes. Because the various sequelae of facial clefts require the coordinated care of a group of well trained and experienced specialists.

The team is active at two levels: regular team consultations and therapeutical activity of the various ten members. Team work has many benefits for the patient, his/her parents and family, as well as for the various team members who coordinate rehabilitation efforts. Facial clefts share a high prevalence, but also a great variability in forms and severity. The large variability seen at birth will express itself in a large variability of consequences (sequelae) on anatomy, development, aesthetics and function of teeth and face.

Impact on feeding and breathing.

These functions are vital. Suction and feeding may be difficult because the newborn may not be able to generate sufficient negative pressure in the mouth due to the existing communication between oral and nasal cavities. Breastfeeding is compromized in the presence of a cleft palate. Bottle feeding is usually possible with some adjustment.

pierrerobinBreathing may also be disturbed, particularly in babys born with the anomaly known as “Pierre Robin Sequence“, a congenital condition that associates a cleft of the palace, mandibular retrognathism (micromandible) (Fig. at right) and glossoptosis (large tongue obstructing in part the upper airway). Glossoptosis interferes with breathing because of its position, high and back in the region of the pharynx.

Sans titre 45

A feeding plate is sometimes useful for the newborn and for that purpose, an impression must be taken by the orthodontist of the team. The impression is made at the hospital usually within 24 hours after birth.

The feeding plate is made in the lab with a special two-layered acrylic resin: the area in contact with the babys’ mucosa is soft, the outside surface (in contact with the tongue during feeding) being in hard, polished and resistent.

Sans titre 52The feeding plate is perfectly adapted to the palate of the baby, who will adapt in a very short time (usually 24 hours). The plate makes feeding easier, because it obturates effectively the oro-nasal communication that exists when there is a cleft of the palate.

Suction is made possible, enabling the baby to bottle-feed almost normally.

In our center, the first surgical intervention will be the surgical closure of the soft palate cleft. It takes place when the baby is 4 months old. The fine sutures which are left are vulnerable and must be protected during the healing phase. The feeding plate is useful to that purpose, avoiding any aggression by outside objects like pacifier, finger sucking, toys, etc…).

After the second surgical intervention (closure of the cleft of the hard palate and lip), the feeding plate will not be useful anymore and will be discarded. Contacts with memebers of the cleft team will be less frequent for a while. Routine consultations with the pediatrician, the pediatric surgeon, the orthodontist and ENT specialist will be organized.

Around the age of 6 years, a diagnostic review will take place. A multi-disciplinary consultation will be called, during which the child will be examined, his/her needs evaluated and any active treatment will be planned, as priorities will become evident.

Priority is not yet orthodontical in nature. Deciduous teeth are still in place and one will only observe évolution and discuss apparent or future potential problems, as well as give dental hygiene advices.

Priority is speech. Before entering school, the child needs to be examined and his/her speech status assessed. A cleft of the palate may be associated with development problems of speech. Nasality of some degree is sometimes observed. Soft palate is responsible for the physiological closure of the upper airway during articulation of certain sounds. If it is not able to fulfill this role, then too much air escapes into the nasal cavities and speech is altered, resulting in what is referred to as nasality.

Even though soft palate is repaired early, its optimal muscular function may not be always possible. Nasality and compensatory phenomena may develop and require speech therapy. This is a priority before school age, in order for the child to enter school with the best possible chances of social integration. Most of the time, speech therapy will result in minimizing or eliminating speech problems related with cleft of the palate.

In some cases however, speech therapy may not be 100% successful and a surgical procedure called pharyngo-plasty may be indicated.  Details of this procedure are outside the scope of this introduction. Such secondary surgical procedures are discussed in the course of the child’s multi-disciplinary meetings.

ENT (Ear-Nose-Throat) specialty.

Cleft may affect ENT functions in various ways. Nasal septum deviation is frequently encountered and may affect breathing. Otitis media is a common problem in patients with cleft palate. This may cause hearing loss which in turn can cause speech development and acquisition. Therefore, routine ENT examination is of utmost importance.

At any time during growth and development of the child and adolescent, psychological problems may arise. Adaptation difficulties, even if rare, may still be a handicap and must find proper assistance and support, even therapy. Parents may need psychological support, to help themselves and their child.

Josée Despars, PhD, is our team member specialized in psychological therapy of  children and adolescents. She is the author of a unique book, unfortunately only available in french at this time, called: “Zoé et le flocon de Max”. Her book explains facial clefts and their consequences to small kids, siblings. It received a fantastic echo in the public and is accessible on the following link:

http://www.lajoiedelire.ch/catalog/hors_collection/zoe_et_le_flocon_de_max

In conclusion, multi-disciplinary team consultations allow for periodic examination of the child, assessment of his/her development and related problems, as well as coordinated planning of treatment according to the patient’s needs and priorities.

For parents, these consultations are opportunities to express their needs, try to receive answers to their numerous questions and get as comprehensive information as possible.

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les fentes faciales: séquelles et solutions thérapeutiques ………………………………………………… cleft lip & palate: sequelae & therapeutic solutions ……………………………………………….. Lippen-Kiefer-Gaumenspalten: ihre Konzequenzen und die therapeutischen Lösungen