Your baby has a cleft lip and/or cleft palate THE FIRST 6-8 WEEKS Cleft lip and/or cleft palate may be diagnosed before birth, at birth, or soon after birth. It occurs when the lip or palate (roof of the mouth) do not join together. During your baby's hospital stay, you may see a: • Plastic Surgeon who will discuss your baby's cleft and surgery and a • Lactation Consultant and/or Speech Pathologist to discuss feeding methods. CLINIC APPOINTMENTS Within four weeks of your baby's birth, you will attend the Cleft Lip and Palate clinic to see the: • Plastic surgeon to discuss lip repair (usually repaired before three months of age) and palate repair (usually by 9-12 months of age) • Speech Pathologist to discuss feeding and early communication skills • Audiologist to organise a hearing test before 12 weeks of age. o Auditory Brainstem Response (ABR): tests hearing before 12 weeks of age. • Orthodontist to discuss presurgical orthodontics o Presurgical orthodontics: tape or a neoprene (elastic material) may be placed across the cleft lip to reduce the size of the cleft before surgery. FEEDING Babies born with a cleft may have feeding difficulties. If your baby has a cleft lip only, you will be able to breast or bottle feed. If your baby has a cleft lip and palate or a cleft palate only, you will be able to try breast feeding but you may also need to use a special bottle and teat. Most cleft palate babies who are breast fed, will still require bottle feeds to grow. The Speech Pathologist will advise you about the most suitable bottle/teat and where to buy them. Remember: • to feed your baby in a more upright position to reduce the chance of milk coming out through the nose and burp your baby more often. • if breast feeding, compress your breast to squeeze milk into your baby's mouth as your baby sucks. • if bottle feeding, use a squeeze bottle and special teat. • to allow a longer time to finish a feed (not longer than 4 5 minutes) as feeding will be slow at first. Feeding your baby should always be enjoyable, but does take practice. TALKING Your baby needs the same opportunities to learn to talk and listen that all babies need. Try the following: • learn to 'read' your baby's facial expressions and body movements. • copy the sounds your baby makes • "talk" to your baby with varying pitch and loudness. CALL 03 9594 2380 FO R M ORE I NFORMATI ON. Your baby has a cleft lip and/or cleft palate 2 MONTHS - 12 MONTHS CLINIC APPOINTMENTS You and your baby will need to regularly attend: Cleft Clinic • to review your baby's lip and palate before and after surgery. • to monitor your baby's feeding and 'talking'. Audiology Department & Ear, Nose and Throat Clinic: • to test hearing and monitor middle ear fluid (ear infections). Hearing should be tested by three months of age. Ear infections and temporary hearing loss are common and can interfere with • speech sound development. • Grommets may be required to treat middle ear fluid and may be inserted at the time of your baby's palate repair. • Grommets: small tubes inserted into the eardrum, allowing air into the space behind the ear drum (middle ear). The Eustachian tubes drain the middle ear, which are connected to the palate and may not work well in babies with cleft FEEDING At approximately 6 months of age, 'runny' solids and cup drinking can be introduced. Avoid sweet drinks to prevent dental decay. FIRST SOUNDS AND WORDS Your baby will go through the normal stages of speech production, but possibly with some differences. As the roof of the mouth (also the floor of the nose) is absent, attempts to say 'p,b,t,d' sounds may sound more like 'm' and 'n”. What can I do? It is important for your baby to look, listen and experience sounds and speech before producing them. • When you make sounds, use a "sing song" voice. • Copy your baby's sounds and talk to him/her with different facial expressions. • Encourage your baby to watch your face when you babble lip sounds, "papapa" or bibibi", or babble tongue sounds "tatata" or "dododo". • Sucking, learning to bite and chew, smiling, blowing raspberries and mouthing objects are all important. Your infant will become more aware of his/her mouth and learn to control and change mouth positions. • Always try to talk about what your infant is looking at and doing, to help him / her understand and learn language. • Use a variety of words (big, hot, under, eating), not just the names of things (hat, cup). • Use short, simple sentences. Your baby has a cleft lip and/or cleft palate FOR TODDLERS AGED 12 MONTHS - 2 YEARS CLINIC APPOINTMENTS Cleft Clinic: appointments will be advised. Ear Nose and Throat Clinic: to check your toddler's hearing and middle ears. Speech Pathology: to assess your toddler's speech and language development TALKING Between 18 months - 2 years of age, your toddler should have an assessment of his/her speech and language skills with follow up appointments as needed. HEARING An audiological assessment (assessment of hearing and of the middle ear) will be performed. Ongoing appointments are advised as middle ear conditions can re-occur. SURGERY Further surgery of the nose, lip and palate may be required. DENTAL CARE You will need to: • organise an appointment with your dentist when your toddler is about 12 months of age, • establish a dental check up for your family with your local dentist every year. • ask your dentist about fluoridation. • establish good eating habits to prevent tooth decay and supervise tooth brushing with fluoride toothpaste. SOUNDS, FIRST WORDS AND CONVERSAT ION Many children with a cleft lip and palate will achieve normal speech and language skills, but some children may have difficulty making some sounds due to the different mouth structure. What can I do? Help your child to: • copy mouth movements, sounds and words with puppets or in front of a mirror. • play blowing games to encourage air flow through the mouth when talking and playing e.g. blowing tissues, whistles. • Remember, these games do not strengthen muscles but will help with sound development. Activities must always be fun. To encourage the development of good listening skills for speech development talk • about sounds e.g. a cow says 'moo' • always use complete sentences when talking to your child • talk about the pictures in books rather than reading the story • play sound games (babble) with your toddler. CALL 03 9594 2380 FO R M ORE I NFORMATI ON. Your baby has a cleft lip and/or cleft palate FOR CHILDREN AGED 2 YEARS - 4 YEARS CLINIC APPOINTMENTS Cleft Clinic: every 6-12 months as advised by the clinic. Ear Nose & Throat Clinic / Audiology: review hearing and middle ear status as advised Speech Pathology: • 2 years: speech and language assessment • 4 years: speech and language assessment TALKING If regular therapy for speech and language development is recommended, your speech pathologist will set up a program for you and your child. Regular daily practice at home is very important for your child's speech and language to improve. HEAR ING Regular audiology reviews are recommended. SURGERY Minor surgical adjustments to lip, nose or palate might be necessary. DENTAL CARE/ORTHODONTICS • Yearly dental reviews are required to monitor how the teeth are forming. • Establish healthy eating habits to prevent tooth decay and supervise tooth brushing with fluoride toothpaste. SENTENCES AND CONVERSATION What can I do? • As your child begins to use a variety of words, help him/her to expand them. • e.g. Child: Car. Parent: Yes, it's a big car. • If your child does have trouble making him/herself understood, ask your child to repeat the word or to how you what he /she wants. If you still can't understand, suggest that you weren't listening properly and try again. • If your child says a word incorrectly with the wrong sound, just repeat the word correctly. Don't expect him/her to be able to copy the word correctly. • Share and enjoy reading books to your child. Say the words that go with the pictures that he/she is interested in. Use naming words, action words (jumping), describing words (hot), and position words (in, under). • Talk about sounds, i.e. 'What sound does a truck make?' • As speech and language are social skills, your child will learn best with his friends and family. Have fun! CALL 03 9594 2380 FO R M ORE I NFORMATI ON. Your baby has a cleft lip and/or cleft palate FOR CHILDREN AGED 4 YEARS - 8 YEARS CLINIC APPOINTMENTS Cleft Clinic As advised for possible: • Further lip or nose surgery • Review of soft palate movement to decide if further surgery is required. A pharyngoplasty may be recommended. Pharyngoplasty: surgery that reduces the gap at the back of the palate and assists speech by reducing the amount of air that can escape through the nose. Fistula closure: after the palate operation the palate may heal, but an opening/hole (fistula) may develop which allows air and food to pass through. It may be closed when another surgical procedure is done. Ear Nose & Throat Clinic: Review hearing and middle ears as advised. Speech Pathology: Review every 6-12 months or attend regular therapy as recommended. Dental Clinic: 6-12 monthly appointments. Orthodontic referral may be required. CLEFT CLINIC TEAM REVIEW at 5 years of age • Speech/language review • Dental /orthodontic review • Review by surgeon WHAT CAN I DO? Dental Care: You will need to continue with healthy eating habits to prevent tooth decay and supervise tooth brushing with fluoride toothpaste. Sentences, conversation and making friends • By four and a half years of age your child will attempt sounds made with the tongue tip (s,z,l), sounds made in the middle of the mouth (sh, ch) and other sounds (j, f) • Sometimes children are teased even if they do not have a cleft. Build up your child's self confidence by talking to him/her and teaching him/her to answer questions simply. Talk to your child's teacher and work together if problems arise. CALL 03 9594 2380 FO R M ORE I NFORMATI ON. Your baby has a cleft lip and/or cleft palate FOR CHILDREN AGED 8 YEARS - 12 YEARS CLINIC APPOINTMENTS Orthodontics: • Preliminary orthodontic treatment. • Possible presurgical expansion of the upper arch to prepare the cleft for bone graft surgery. • Possible fixed appliance after alveolar bone graft. Cleft Clinic: • Bone graft surgery will be discussed. • Alveolar bone graft: alveolar cleft repair is a procedure performed when there is insufficient bone in the area of the alveolar (gum line). The bone is grafted to guide the eruption of the permanent teeth. 10-12 years: Cleft Clinic Team Review • Surgical review • Speech and language review • Dental/ orthodontic review WHAT CAN I DO? Speech intelligibility and conversation • By 8 years of age children can say all of the sounds clearly. The last sounds to develop are "v", "th" and "r". The "sh", "ch" and ‘j’ sounds may still be unclear and sound 'slushy". This will generally be due to the dental occlusion and narrow upper arch. • Additional speech therapy may be required after removal of the fixed appliance following a bone graft. CALL 03 9594 2380 FO R M ORE I NFORMATI ON. Your baby has a cleft lip and/or cleft palate FROM 12 YEARS- ADULTHOOD CLINIC APPOINTMENTS Cleft Clinic • Nose, lip or jaw surgery may be required. Orthodontics • Moveable and/or fixed plates or braces may be required. • Any required Orthodontic treatment is usually completed during this period. Dental Clinic • You will need to continue with 6-12 monthly dental reviews CLEFT CLINIC TEAM REVIEW at 15 years of age: • Surgical review • Speech and language review • Dental / Orthodontic review CLEFT CLINIC TEAM REVIEW at 20-26 years of age: CALL 03 9594 2380 FO R M ORE I NFORMATI ON.