- What causes cleft lips and palates?
- What is the best way to feed a new baby with a cleft?
- Where can I get special bottles to feed my baby?
- When will my baby/child have surgery?
- What is Nasoalveolar Molding (NAM)?
- Will my child need any further treatment for the teeth?
- What is Distraction Osteogenisis?
- What is Cleft lip/palate clinic and when is the first visit?
- Why do we need to come to clinic?
- Why do I need to have my child’s hearing tested?
- Will my child require speech therapy?
- What can Children with Special Health Needs help pay for?
- How can I talk to other families who have children with clefts?
Cleft lips and palates happen when there isn’t proper closure of the facial structure during growth of a fetus. The parts of the face and mouth develop separately, but ordinarily come together in the early months of fetal life. If for some reason the process is interrupted, the fusing may not take place or only partially take place. It is not known at this time why interruption in the fusing process happens.
For a small percentage of children born with cleft lip/cleft palate there may be a genetic factor. If one parent or child in a family has a cleft, the chances of a future child being born with a cleft increases.
In the initial days feeding may be a challenge. A baby with a cleft may have difficulty making a tight seal around the nipple of a bottle or breast, and the baby with a cleft palate often cannot generate an effective suck.
There are special bottles and nipples which help to make the feeding easier. Some mothers planning breast feeding may decide to pump and use a bottle until the surgical repair has taken place.
Infants with cleft lip and/or palate may have longer feeding times which can cause them to get tired; they may swallow air with feeding. Sometimes breast milk or formula may come out the nose, but being aware of this you can experiment with positioning and some of the bottles available.
There is support available through hospital feeding specialist and from the CSHN nurses on the cleft palate team. (See the section on feeding)
The special bottles (usually a Haberman Feeder or Pigeon bottle) are available from Children with Special Health Needs a division of the Vermont Department of Health. Many hospitals also stock these specialized feeders.
Cleft lips are usually repaired within the first three months after birth or when the baby weighs at least ten pounds. Cleft palates are usually repaired at nine to twelve months of age.
A consultation visit with a plastic surgeon soon after birth will give parents full details about the procedure and scheduling surgery.
Depending on the width of the cleft and the presence or absence of a cleft palate, a short period of reshaping the mouth and nose may be recommended.
NAM is a technique in which the alveolus (gum ridges) and/or nose are molded with an appliance similar to an orthodontic retainer. This is usually done by a specially trained orthodontist prior to surgery, in order to make surgery simpler.
The baby wears the appliance 24 hours a day for a period of weeks or months. It does not interfere with feeding or breathing for the baby.
Nearly all children with cleft palate need braces because the teeth closest to the cleft tend to come in at incorrect angles or not at all. Orthodontics may begin as early as age 5 or 6.
In some older children a “bone graft” is needed to allow the adult teeth to come in properly. Small bone fragments are taken from the hip and placed in the gap in the alveolus (bone edges of the gum) by an oral surgeon. This allows the adult teeth to have a solid surface to erupt into. The orthodontist and the oral surgeon will determine if this is necessary some time between ages 8 and 10.
For some children with more severe facial problems more oral surgery becomes necessary when they are teenagers.
Distraction Osteogenisis (DO) is a surgical technique in which bones in the jaw are cut and an appliance applied. This procedure is usually done to advance the mid-face or upper jaw. After surgery the appliance is left on for 6-8 weeks and gradually adjusted, moving the bones (distraction).
The bone then responds by filling the gap with new bone. Mispositioned bones may then be gradually brought into more correct alignment. It may look awkward but is really fairly painless.
The American Cleft Palate-Craniofacial Association recommends that children with clefts be seen by an team of doctors and care providers to best plan care and treatment.
The team includes:
- Plastic surgeons - perform reconstructive and cosmetic surgery.
- Oral surgeon - treats the mouth, jaws and face.
- Pediatric otolaryngologist - ear, nose and throat doctor.
- Orthodontist - treats misaligned teeth.
- Speech pathologist - evaluates and treats speech, language, voice, swallowing, fluency, and other related disorders.
- Geneticist - diagnoses, treats, and counsels patients with genetic disorders or syndromes.
- Audiologist - diagnoses and treatment of hearing problems.
- Social worker - performs casework and counseling.
- Nurses - coordinates care, clinic visits, provides support and information.
All have many years of experience working with children with clefts and their families.
The first clinic visit usually happens in the first year, but not necessarily before surgery. For the first few years children are seen annually, but after that it may be every two or three years depending on the child and his/her needs. Certainly the family may always request an appointment.
Coming to clinic allows the family to see many of the child’s health care providers at the same time. This can save time and travel for the family.
The clinic visit also gives the health care team the opportunity to discuss with each other and the families what may be the best plan for the child’s ongoing care with regard to cleft lip/cleft palate.
The members of the team offer expertise in many issues about cleft lip/palate and can coordinate ongoing services.
Annual hearing testing is recommended to monitor children with cleft lip/palate because they are more prone to middle ear infections and problems.
Testing may happen more frequently if middle ear problems last for a long time. If a child shows a decrease in hearing or is having chronic middle ear problems, they may be referred to an ear, nose, and throat (ENT) specialist.
Because of the cleft in the roof of the mouth, children with cleft palate cannot seal off the nose when they talk. This may make the speech sound “hypernasal”. By repairing the cleft at the appropriate time many children develop normal speech.
Despite palate surgery some children are unable to effectively seal off the nose when speaking and they may require speech therapy or an additional surgical procedure. A surgery called a “pharyngeal flap” uses tissue from the back of the throat to partially close off communication between the mouth and the nose, and improve speech.
CSHN is funded by state and federal funds. We can help pay for surgeries and procedures recommended by the clinic team and directly related to cleft lip, cleft palate or other craniofacial difference.
We say “help” because private insurance or Medicaid are always billed first. Some families are asked to pay a portion of the cost or a deductible depending on their income. It is important to complete annual cost share forms; this deductible is based on family income and size, and ranges from $0-$600/per year.
If you have questions about coverage for your child’s treatment talk with the CSHN nurses or social worker.
The nurse or social worker on the team can facilitate matching families who would like to talk with another family who has experience with a child with a cleft lip or palate.