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Whether your child has just been diagnosed with a cleft lip or palate, is scheduled for surgery, or on the road to recovery, you probably have lots of questions. The following are the questions we are asked most often before and during visits. Of course, if you don't find the answers to your questions, please feel free to contact us at 682-885-7770.
A cleft lip is an opening in the upper lip, usually just below the nose. A cleft palate is an opening in the roof of the mouth (hard palate) or in the soft tissue at the back of the mouth (soft palate). In the majority of cases, a cleft lip and cleft palate occur together.
Early in pregnancy, all babies have an opening in the lip and palate. As the baby grows, these openings should gradually grow together. By birth, the openings should be closed. For some reason, in children with oral-facial clefts, these openings fail to close. The exact reason these openings do not close is not known. The important thing to remember is that having a baby with a cleft lip/palate is not your fault. There can be many reasons why this occurs, but sometimes things just happen. It could be due to genetics or medication, but no one knows for certain. What we do know is how to treat it to give your baby the best opportunity possible for a healthy future.
To ensure your child's comfort, your doctor will recommend the appropriate anesthesia for your child. To close a cleft lip, an incision on either side of the cleft creates a flap that is then drawn together with stitches. To close a cleft palate, the surgical team creates a flap and that allows for the rebuilding of the tissue, bone, and muscle of the palate. The flap is then closed with stitches. It is important to note that because of a child's continued growth and development, additional procedures may be necessary.
What is the approximate length of time for the surgery? The extent of surgery depends on whether the child has a cleft lip, palate or both. Having a cleft lip doesn't mean he or she will also have a cleft palate. The cleft lip and cleft palate are formed at two different stages of pregnancies. In order to fix the cleft lip children usually will have surgery at 3 to 6 months. A second surgery may be needed, but that depends on if one or two sides are affected.
If only one side is affected then only one surgery on the lip will be needed, but if both sides are affected he or she will need two surgeries on the lip. The first surgery is when the baby is 3 to 6 months old, but doctors will decide for sure based on how your child is doing. The next surgery would then be at 9 to 12 months or age or when the child is ready.
Every case is different, and the length of time of each surgery is dependent on many factors such as type of repair, whether it is cleft lip, palate or both and if one or both sides are affected. This is a question your doctor should be able to answer prior to the actual surgery.
For the first two surgeries you can plan on staying 2-3 nights. The palate surgery is more extensive, and requires two or three nights in the medical center. The first night is usually in the Pediatric ICU to make sure your child doesn't aspirate or choke.
Though rare, after the palate is pulled together during surgery it can later come apart. In this case the surgeon would need to go back in and re-close it.
Yes, your baby can eat after the surgery. You will begin feeding using a dropper and eventually your baby will graduate to the bottle. The type of bottle used will depend on your child's needs. There is the Pigeon bottle, Haberman bottle, and several other types of bottles. A speech therapist will work with your child to find out what their specific needs are and what bottle they need. They will make sure you have resources to find that bottle.
Your child will be at risk for choking and it would be wise to take a CPR class in the event that something might happen.
It depends on the extent of the cleft lip/palate. There are special devices available to help babies latch on and you can contact the lactation consultant to assist you. However, if your child has a cleft lip and palate the lactation consultant will prefer that the baby use the bottle to measure how much he or she is actually consuming and to ensure your baby is getting enough nutrition. If you are breastfeeding, you can pump and feed your milk to the baby from the bottle.
The stitches are done in layers so they cannot be broken. They will dissolve over time. Your child will have to wear braces on their arms, sometimes called no-nos. The braces are worn for ten days, and keep your child from bending their elbows so when they are not being supervised they can't touch their lip.
Your pediatrician will help you determine when it's time for your child to begin eating solid foods. You should keep in mind that until the palate is repaired anything your child eats will often come out the nose. Therefore, your child needs to eat more liquefied foods that can easily pass from nasal passage.
At Cook Children's, our goal is to restore as much of a child's normal appearance as possible. After surgery, your child will have scars, but thanks to advancing surgical techniques, those scars will fade in time. Your child may also initially have issues with speech, but those issues can be addressed and overcome with the help of a speech therapist.
Where will you get the tissue from this to correct the nose? Most often with bilateral cleft palates little or no nose is formed. It depends on the child and how the nose grows with the child. Sometimes the septum will move and have to be realigned. Doctors can use tissue from the existing nose, or from the ear lobe if there is no nose, to rebuild one. Your doctor will determine if your child's condition requires rhinoplasty.
Most babies with bilateral cleft lip and palate will require jaw surgery, but this usually occurs later on down the line.
A child with a cleft palate can have difficulty sucking through a regular nipple due to the gap in the roof of the mouth. Most babies require a modified or special nipple to properly feed.
Children with an unrepaired cleft palate have a nasal quality to their speech because air escapes through the gap in the roof of the mouth and out the nose. After cleft palate repair, most children develop near normal speech. In some cases speech therapy improves persistent nasal speech. Your physician can help you determine if your child needs this type of therapy.
A child with a cleft palate is at risk of developing frequent ear infections because of fluid build-up in the middle ear. Ear tubes can be inserted at the time of lip or palate repair to drain the middle ear and reduce the risk of ear infections. Repeat ear infections can cause scarring of the eardrum which affects hearing.
A child with cleft palate or a cleft through the gum line may have missing or abnormally shaped baby and permanent teeth. In addition, the upper jaw may not grow as far forward as the lower jaw, which could require corrective surgery later in life. Your cleft team will refer you and your child to a dental and orthodontic expert who can successfully treat these problems.
Your child automatically qualifies for Early Childhood Intervention (ECI) due to his or her cleft lip/palate. This allows your child to have access to occupational therapy to help them stay on target developmentally and to get speech therapy when needed. ECI also has a dietitian to make sure children get enough nutrition and gain weight.
A special daycare is not required for your child. It is important to find someone who will take time to work with your child.
What about my grandchildren, will they be at risk for a cleft lip/palate? We understand your concerns and our genetics counselor will gladly talk with you to help you get more information.
You're the biggest advocate for your child. Be prepared to answer questions from family, friends, educators and even strangers, but don't be ashamed of your child. Instead, be proud that you have a special child. Babies and young children can't advocate for themselves. As your child grows, you can help him or her understand their condition and help prepare them for the questions and reactions that they will encounter as they grow up. Do your research and don't be afraid to ask questions of your child's medical team.
If your child has been diagnosed, you probably have lots of questions. We can help. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-7770.
Contact us at 682-885-7770