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Cleft Palate Repair
WHAT YOU SHOULD KNOW:
- Cleft palate (PAL-hut) repair is surgery to fix the roof of your child's mouth. Cleft palate is a common birth defect (problem). The roof of your child's mouth did not grow together normally. The palate has a bony part (hard palate) in front and a soft part (soft palate) in back. The cleft (opening) may be in the hard palate, soft palate, or both.
- The cleft (opening) may be on one or both sides of your child's palate. If it is on one side, it is called a unilateral (u-nih-LAH-ter-al) cleft. If it is on both sides, it is called a bilateral (bi-LAH-ter-al) cleft. The uvula (U-vew-luh) may also be split. The uvula is the tissue hanging down in the back of your child's throat. In many cases, caregivers do not know why clefts happen. Your child may be more likely to have a cleft if a family member had one. Medications, infections, smoking or alcohol taken during pregnancy may cause clefts.
AFTER YOU LEAVE:
- Keep a list of what medicines your child takes. Write down why your child is taking the medicine, how much is taken, and how often. Bring the list or the pill bottles when you visit your child's caregivers. Ask your child's caregiver for more information about his medicines.
- Do not give any medicines to your child without first asking your child's caregiver. This includes prescriptions, over-the-counter drugs, vitamins, herbs, or food supplements.
- Always give your child's medicine as directed by caregivers. Call your child's caregiver if you think your child's medicines are not helping. Another reason to call is if your child is having problems with the medicine.
- Do not quit giving the medicines to your child until you discuss it with your child's caregiver. If your child is taking antibiotics (an-ti-bi-AH-tiks), give them until they are all gone. Antibiotics should be finished, even if your child is feeling better.
- Never give aspirin to your child without first asking your child's caregiver. Giving aspirin to your child when he is ill may cause a very serious illness called Reye's syndrome. Read medicine labels to see if your child's medicine has aspirin.
Keep all appointments:
Ask for more information about where and when to take your child for follow-up visits:
For continuing care, treatments, or home services for your child, ask for information.
Most children feel better quickly after surgery. Let your child rest as much as needed. Your child will return to normal activity when he feels ready.
Protecting your child's incisions:
Your child's mouth needs to be protected for at least 5 or 6 weeks after surgery. It may take five weeks or longer for your child's mouth to heal. If the stitches are not protected, they could pull or break. This may cause more bleeding, pain, or scarring for your child. Your child may need another surgery if the stitches separate. It is important to watch your child at all times to prevent this from happening.
- Your child should not put his hands or other things into his mouth. Padded arm boards are used to keep your child's elbows straight. Long sleeves should be worn under the arm boards to stop the boards from rubbing on your child's skin. The arm boards keep your child from rubbing his face with his hands or upper arms. The arm boards will need to be removed 3 to 4 times a day, one at a time. This is so that your child's arms can get exercise. Do not leave your child alone when the arm boards are off.
- Avoid stress being put on your child's surgery areas. If your child sucks, blows bubbles, laughs, or cries, the stitches may pull. Holding, cuddling, and talking to your child will calm him and may decrease the risk. Your child will cry less if you keep him fed, dry, and rested. This is a hard time for your child. Hold your child a lot, even when he is fussy or crying.
Feeding your child:
- Use a cup, a rubber-tipped syringe, or the side of a spoon to give your child liquids. Do not use a bottle or a straw.
- When feeding your child, hold him in an upright sitting position. His head should be higher than his stomach. This will keep liquids from going into his lungs (causing choking) instead of his stomach.
- Feed your child slowly. Burp your child after every 1 to 2 ounces of liquids he takes. Your child may get messy during feedings, or spit up often. It is a good idea to have burp cloths handy to gently dry your child's face when needed.
- If your child is old enough, caregivers will tell you when to start feeding him soft foods. These are foods that do not need to be chewed. Examples are applesauce, custard, pudding, or other mashed foods. Your child will need to eat soft foods for about 1 month after surgery. Your child should not feed himself because the surgery area could be hurt. Do not give your child lollipops or anything hard in his mouth.
- Keep your child away from people with colds, the flu, or other infections until his surgery is healed.
- Keeping the inside of your child's mouth wet will help keep the surgery area clean. Rinse your child's mouth after each feeding and at bedtime. Do this by gently spraying water or salt water over the area using a spray bottle. Sitting your child upright with his head forward may make this easier. This will keep your child from choking and being afraid.
- Saliva (spit) and milk may go into your child's ears if he is fed while lying down. This may cause ear infections. Keep your child in an upright position during feedings. His head should be higher than his stomach.
Other necessary follow-up care:
Your child may need to be seen by many different caregivers as he heals from surgery, and as he grows. A team of people working together can help make sure your child recovers and grows as well as possible. The team may have physicians, nurses, counselors, social workers, and speech therapists. The team may also include dentists, a respiratory (lung) therapist and a dietician (di-uh-TISH-un). The team will work together to meet the following goals:
- Re-shape your child's mouth as needed.
- Help your child learn to speak normally.
- Make sure your child can swallow without choking, and gets good nutrition.
- Give you, your child, and your family help and support.
Orthodontic (or-thuh-DAWN-tik) and dental care:
Your child may have problems with cavities and gum infections because of his cleft palate. Ask caregivers how often you should take your child to the dentist. Even after surgery, your child may have problems with how his teeth grow. Your child may need braces or other help for his teeth several times as he grows older.
Even after surgery, your child may need help learning how to talk in a normal way. A speech therapist is specially trained to help your child learn to speak better. Your child may need to work with a speech therapist for many years. Your child also may need more surgery to fix his palate.Caregivers may do one or more of the following tests on your child. These tests can help caregivers find out if there are problems that keep your child from speaking or swallowing normally:
- Videofluroscopy (vid-e-o-floor-AH-skuh-p): During this test, your child will be given a special liquid to drink. After he drinks it, several x-rays are taken while your child speaks or swallows. This test may help caregivers find problems with swallowing, and other problems.
- Nasendoscopy (nay-zen-DAH-skuh-p): This test may also be called nasopharyngoscopy (nay-sew-fair-in-GAWS-skuh-p). Caregivers put a tube into your child's mouth or nose. A tiny camera on the end of this tube shows caregivers what happens when your child speaks.
Your child may feel different as he grows older if he does not sound like his friends when talking. Having to wear braces because of teeth problems also may upset your child. Your child may need to have one or more surgeries to fix his palate as he grows. Having to see caregivers may make your child feel different. He may feel sad or angry. Encourage your child to share his feelings with you. Call your child's caregiver if you think your child is having trouble coping.
You may feel sad, ashamed, or angry because your child has a cleft palate. You may blame yourself and think you have done something wrong. These feelings are normal. There is nothing you could have done to prevent your child's cleft palate. Talk about your feelings with a caregiver or with someone close to you. Ask caregivers about support groups for parents of children with clefts. Such groups may help give you support and teach you more about your child's condition. You can contact the following organizations for more information:
- Cleft Palate Foundation
1504 E. Franklin St, Ste. 102
Chapel Hill , North Carolina 27514-2820
Phone: 1- 919 - 933-9044
Web Address: http://www.cleftline.org
- Having a child with a cleft palate may be stressful. Since it is hard to avoid stress, learn to control it. Learn new ways to relax. Deep breathing, relaxing muscles, meditation, or biofeedback are some examples of ways to relax. Talk to caregivers about things that upset you. Ask for help from friends or family members when you need it.
- It is very important not to smoke around your child. Second-hand smoke harms your child's heart, lungs, and blood. It is never too late to quit smoking if you smoke. You will help yourself and those around you by not smoking. Ask your caregiver for the CareNotes™ handout on how to stop smoking.
CONTACT A CAREGIVER IF:
- Your child has a fever.
- Your child's stitches come apart.
- Your child's stitches are swollen, red, or have pus coming from them. This may mean they are infected.
- Your child has pain that will not go away.
- Your child has chills, a cough, or sounds congested. These are signs that your child may have an infection.
- Your child's skin is itchy, swollen, or has a rash. The medicine your child is taking may be causing these symptoms. This may mean your child is allergic (uh-LER-jik) to the medicine. This can be a serious problem.
- You are having problems feeding your child, or your child is losing weight.
- Your child is not acting like himself.
- You have any questions or concerns about your child's medicine or care.
SEEK CARE IMMEDIATELY IF:
- Your child can not breathe or his lips, fingernails, or toenails turn blue. This is an emergency! You should call (0) operator or 911 to get help right away.
- Your child is having bleeding from his stitches that is heavy, doesn't stop, or is causing him to choke.
- Your child is showing signs of dehydration. These signs may include urinating less than normal, crying without tears, or dry, chapped lips. If your child is an infant, he may have a sunken soft spot (fontanel) on the top of his head.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.