What is a cleft lip - cleft palate problem?
As a baby grows before birth (at 8-12 weeks gestation), parts of the face or palate may not grow together resulting n a space with missing tissue, a cleft. These clefts in the lip or palate may be partial or complete and may be missing bone, muscle, skin and fat tissue. All types of clefts are usually corrected surgically at an early age. These are the issues addressed at regular visits with the doctor.
What concerns need to be addressed for children with a cleft palate
When there is a cleft palate and a missing portion of the roof of the mouth, initial feeding may be difficult because the baby cannot suck properly. Special feeding clinics provide nipple options and coaching to assist with good nutrition. Pre-surgical tapes, splints, or appliances will often be used to bring the various structures of the face into optimal position before Dr. Hobbs repairs the cleft palate. Dentists and orthodontists may be of great help early on, and then later with dental care. Cleft lip surgical repair takes place around three months and cleft palate repair is done around one year of age. This may improve the appearance dramatically but function is just as important. By having the roof of the mouth (the palate) repaired normal speech is possible. Hyper-nasal speech occurs with sounds coming out the nose if the palate is missing or not moving correctly. If the palate is repaired by 12 months before the speech mechanism is required by the child, everything is easier. Wrong speech patterns do not develop and are avoided by this early cleft palate repair. Speech therapy is an ongoing and integral part of treatment for a successful outcome. An ear, nose and throat specialist (ENT) working with the cleft lip and cleft palate team may advise myringotomy tubes for the ears to prevent hearing loss and minimize ear infections. Children with cleft palates tend to have a increased incidence of middle ear problems. ENT assessments are routinely advised and available to optimize ear function. Pediatricians an genetic counseling are arranged for all cleft children. This aids in determining if there are other issues, such as cardiac or kidney anomalies that occur with some clefts. The majority of children born with a cleft lip and cleft palate have no mental deficiencies.
How frequently do cleft lip and cleft palates occur?
Cleft lip and cleft palate problems occur anywhere from 1 in 500 to 1 in 1,000 children born. Statistics indicate Asian children have higher cleft rates than Caucasians who, in turn, have higher cleft rates than those of African origins. some genetically inherited conditions, such as Stickler's syndrome, may have higher than usual inheritance rates for cleft lip and cleft palate issues.
What are the causes of a cleft palate or cleft lip?
Most clefts are caused by a combination of environmental and genetic components. Drugs such as accutane, radiation, and infections (particularly some viral infections) may cause clefting. Alcohol and tobacco products are associated with increased clefting, For most couples with a single cleft child there is a greater than 90 percent probability the next child will not have a cleft problem.
What other cleft palate surgery or cleft lip care do cleft children require?
As cleft lip children grow into school age they may require some form of open rhinoplasty. Frequently, the cartilage at the tip of the nose needs repositioning and the nostrils made more symmetrical. If the lip is thin or deficient on one side, fat grafting from the abdomen may help create a full symmetrical lip. Fat is removed from the abdomen using an incision less than one-quarter inch and then injected into the lip via a one-eighth incision in the crease at the corner of the mouth. This may give a much fuller natural lip. If there has been a cleft palate, orthodontic appliances are used to give correct dental alignment. Then, around 8-11 years of age, bone grafting may be required to provide a good foundation for the permanent teeth. Speech therapy assessments are continued on a regular basis. Some children need speech therapy while others with well-functioning palate need none. Because scar tissue (which is present in all repairs) does not stretch and grow equally, compared to normal tissue, there may be small touch-up surgeries required as the child grows. These short-day procedures are very helpful before the child enters adolescence.
At times NAM(nasal alveolar molding) with Dyna Cleft tapes &/or nasal elevators, or a Latham appliance may be required to mold the face. Dr. Hobbs will discuss with you as needed.
Cleft lip repairs are done when the baby is 3-5 months old and at least 10 pounds weight. If the baby is not 10 lbs. we wait until this occurs.
Cleft palate surgery occurs about one year of age & before the child begins to talk. This promotes more normal speech development & decreases the need for speech therapy later.
Instructions following CLEFT LIP SURGERY:
DIET:
1. Use only a Brecht feeder (syringe with rubber tube) for 3 weeks after surgery.
2. DO NOT breastfeed; DO NOT use a nipple or spoon or pacifier.
3. You can use any food that is liquid or pureed.
RESTRICTIONS:
1. A pacifier is not allowed for 3 weeks.
2. Arm splints are to be worn for 3 weeks. (This is to keep the fingers away from the mouth.)
3. The child must sleep on his back if he cannot turn over or in an infant/car seat for 3 weeks.
(This is so the stitches will not be rubbed.)
SUTURE CARE:
1. Your surgeon will instruct you on the care of the mouth.
2. Clean the external suture line with hydrogen peroxide on a Q-tip to remove all blood crusts. Then, apply bacitracin zinc ointment. Do this procedure 4 times a day.
3. The stitches may begin to come out in 3-5 days as you clean them. They will be removed by Dr. Hobbs one week after surgery.
FEEDING CLINIC phone number 864-560-6480.
Instructions following CLEFT PALATE SURGERY:
DIET:
1. Use a cup or syringe ONLY, for 3 weeks after surgery.
2. You may not breast feed or use a nipple or spoon.
3. Your child may drink a FULL LIQUID DIET using a cup or syringe.
In the FULL LIQUID DIET:
a. Avoid feeding any food that can penetrate the tender palate tissue. (Example: bread crusts, toast, cookies, crackers, potato chips, tortillas, popsicles, whole meat, chunks of food, jello that is eaten with a sucking motion)
b. You can give any liquids or baby food if you thin it with juice or broth. (As long as it pours, it is usually safe.)
RESTRITIONS:
1. NO fingers, bottle nipples, pacifiers, or straws are allowed for 3 weeks. (Cups that have lids with no spout are okay.)
2. NO crisp or crunchy foods are allowed for 5 weeks. (toast, crackers, etc.)
3. Arm splints are to be worn for 3 weeks. (This is to keep the fingers from the mouth.)
SUTURE CARE:
NONE – the stitches will dissolve and fall out by themselves in about 1-3 months.
TIME LINE:
Stage 1: Birth to 2 weeks of age
• Feeding team evaluation
Stage 2: 3 to 8 weeks of age
• Genetics evaluation
• Dentist or orthodontist visit for pre-surgical molding devices
• Referral to ear, nose and throat (ENT) doctor if needed or hearing (audiologist) screening
Stage 3: Weekly or biweekly clinic visits for next 2 to 3 months
• Feeding follow-up and weight check
• If using a presurgical appliance - Nasal Alveolar Molding (NAM) or Latham Appliance - visit with your orthodontist or pediatric dentist to adjust the appliance
Stage 4: Surgery 3 to 12 months
• Cleft lip closure 3 to 5 months of age
• Cleft palate closure 9 to 12 months of age
Stage 5: Toddler years
• Team visits every year to 2 years. First speech evaluation at 12 to 18 months of age
• First dental evaluation after the eruption of first tooth or least by 12 months of age. Then, regular follow up dental visits as advised by pediatric dentist. NOTE: Speech and dental visits are often done together at this visit.
• Possible speech surgery, if needed
• Continued well-child exams with your child’s primary care provider
Stage 6: School-age years
• Visits every 1 to 2 years, based on need
• Possible cleft lip revision, cleft nasal (nose) revision at 5 to 6 years of age
• Speech therapy
• Possible speech surgery, if needed
• Dental check-ups/cleaning every 6 months
• Dental and orthodontics if needed 6 to 11 years of age
• Audiologist or ENT screening
• Continued well child exams with your child’s primary care provider and plastic surgeon.
Stage 7: Teenage Years
• Cleft lip and scar revision, cleft nasal (nose) surgery, if needed
• Jaw advancement, if needed
• Dental check-ups and orthodontics visit
• Braces, surgery, prosthetic dentistry, if needed
https://acpa-cpf.org/acpa-family-services/community-stories
https://nursingcrib.com/nursing-notes-reviews/maternal-child-health/cleft-lip-and-palate/
https://www.mayoclinic.org/diseases-conditions/cleft-palate/symptoms-causes/syc-20370985
https://kidshealth.org/en/parents/cleft-palate-cleft-lip.html
https://smileswithscars.wordpress.com
BOOKS:
"I wish I'd Known Clefts Create Courage" by JulieCwir
"The Cleft Palate Story" by Samuel Berkowitz
Google "Cleft Lip and Palate books" - there are many to choose from...
PEDIATRIC REHAB SERVICES: 864-560-6480
FEEDING SPECIALISTS & SPEECH THERAPY:
Megan Richman 864-560-2148
POSSIBLE SPECIALISTS NEEDED:
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Orthodontist: ____________________________________
Geneticist: _______________________________________
Occupational therapist: __________________________
Craniofacial surgeon:_____________________________
Craniofacial nurse practitioner: _________________
Psychologist: _____________________________________
Neuropsychologist: ______________________________
Social worker: ____________________________________
In the hospital:
Chaplain: _________________________________________
Child life specialist: _______________________________
School teacher: ___________________________________
Primary nurse (inpatient): ________________________
Other numbers:
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Closest relative or neighbor: _____________________
Insurance company: ______________________________
Medicaid number: _______________________________
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