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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.
You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's caregivers to decide what care you want for your child.
- There are always risks with surgery. Your child may bleed more than usual, or get an infection after surgery. Your child may have trouble breathing, or get blood clots. Caregivers will watch your child closely for these problems. If your child is allowed to put his hands to his mouth, or a toy in his mouth, he may hurt the incisions. If your child's skin separates away from the stitches, surgery may have to be done again. This may also cause more scarring.
- The most common problem with cleft palate repair is poor healing. It is common for children with clefts to need repair surgery more than once.
- If the cleft palate is not fixed, your child could have problems sucking, swallowing, and gaining weight. Feeding problems may allow liquids to back up into your child's ear canals. This increases the chance of ear infections, which may cause long-term hearing problems. He may also have problems talking because of his cleft.
- Your child may have emotional problems, even with surgery to repair the cleft. This may be because he looks or talks differently than other children. It can also happen if your child feels different because of having to see caregivers. Call your child's caregiver if you have any questions or concerns about your child's care.
WHILE YOU ARE HERE:
What is the call button for?
A call button will be in your child's hospital room.You should use the call button if your child is having problems and a caregiver is needed. You may also use the call button if you have questions for a caregiver. Be sure to keep the call button within reach at all times.
How can I keep my child from being scared in the hospital?
You may stay with your child for comfort and support. Ask caregivers if another family member may stay with your child when you cannot be there. Bring in something from home that your child likes. A blanket, a favorite toy, or clothing from home may be comforting to your child.
What is informed consent?
- You may be asked to sign a consent form. A consent form is a legal paper that gives caregivers permission to do certain tests, treatments, or procedures. This form should tell you exactly what will be done to your child. Be sure all your questions have been answered before you sign the consent form.
- You have the right to understand your child's health problem. You should understand what tests, treatments, or procedures may be done to treat your child's cleft palate. Your child's caregiver should also tell you about the risks and benefits of each treatment. This should be done before you sign a consent form.
What is an IV?
An IV is a small tube placed in your child's vein. It may be put in the hand, arm, ankle, foot, or head. The IV may be hooked to tubing and a machine that will give your child liquids or medicine. The IV may also be capped and not be connected to any tubing. Let a caregiver know if your child's IV site seems painful, or is red, swollen, or leaking.
What are antibiotic (an-ti-bi-AH-tik) medicines?
Antibiotics may be given to help your child fight an infection that is caused by germs called bacteria (bak-TEER-e-uh). An allergy to antibiotics may happen suddenly, even if your child has taken the medicine before. Tell caregivers if your child has ever had a rash, trouble breathing, or reaction to any medicine.
What tests may my child need?
Your child may need one or more of the following tests. These tests help caregivers plan your child's treatment.
- Blood Tests: Your child may need blood taken for tests. The blood may be taken from your child's arm, hand, finger, foot, or heel. It is then tested to see how your child's body is doing. Your child may need to have blood drawn more than once.
- Chest X-ray: This is a picture of your child's lungs and heart. Caregivers use it to see how your child's lungs and heart are working. They may also check for other birth problems besides the cleft palate.
- Heart Monitor: This may also be called an EKG or an electrocardiogram (e-lek-tro-KAR-d-o-gram). It is a test to see how your child's heart is working. Sticky pads are placed on your child's chest. Each pad has a wire that is hooked to a TV-type screen or to a small portable box. This screen or box lets caregivers see a picture of your child's heart activity.
- Pulse Oximeter (oks-IH-mih-ter): This is a machine that shows how much oxygen is in your child's blood. A cord with a clip or sticky strip is placed on your child's foot, toe, hand, finger, or earlobe. The other end of the cord is hooked to a machine. This may need to be used once in a while, or be left on all of the time. Tell a caregiver if the machine is sounding an alarm. Never turn the pulse oximeter off without asking your child's caregiver first.
- Vital Signs: This may include taking your child's blood pressure, pulse (number of heartbeats), and respirations (number of breaths). Your child's temperature may be taken in the mouth, ear, armpit, or rectum (rear-end). Caregivers may listen to your child's heart and lungs by using a stethoscope (STETH-uh-skop).
- 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.
What caregivers will be caring for my child?
Your child may need to be seen by many different caregivers, before and after surgery. A team of people working together can help make sure the surgery and recovery goes smoothly. 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.
- 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.
Pre-op care is the care your child gets right before surgery. It may be done in your child's room or in a special pre-op area. Your child may be given medicines before surgery so that he is sleepy and more relaxed. Your child may also be given antibiotics (an-ti-bi-AH-tiks) to help fight infection. Your child is taken in a wheeled bed or crib to the room where surgery will be done. A caregiver will stay with your child to make sure he is warm, safe, and comfortable.
General Anesthesia (an-iss-THEE-zuh):
This is medicine to keep your child completely asleep during surgery. This medicine may be given in his IV or as a gas that he breathes. Your child may have an endotracheal (end-o-TRA-kee-ull), or “ET” tube, placed in his windpipe. This is to make sure he gets enough oxygen while he is asleep.
- A caregiver cleans your child's face with soap and water. This soap may make your child's skin yellow. Sheets are put over your child to keep the area clean. To repair your child's palate, the doctor will cut along each side of the cleft. Tissue from either side of the cleft will be drawn together to close the hole. The skin is stitched together with special thread. When the edges heal together, it will be easier for your child to eat and learn to speak properly.
- The surgery may last 2 to 4 hours. Ask your child's doctor how long the surgery may take. Sometimes the surgery may take longer than you were told. This is normal and is no reason to worry.
This is a room where you and your family can wait until your child is ready for visitors after surgery. Your child's caregivers will look for you in the waiting room to let you know how the surgery is going. If you leave the hospital, be sure that caregivers have a phone number where you can be reached.
Your child will be taken to a recovery room and will stay there until he wakes up. You may be able to visit your child in the recovery room after caregivers get your child settled. The amount of time your child will spend in the recovery room depends on how fast he wakes from anesthesia. Your child will then be taken back to a regular hospital room. Do not let your child get out of bed until a caregiver says it's OK. Keep the side rails of your child's bed or crib up at all times for his safety.
Your child may need oxygen after surgery. He may get extra oxygen through a nasal cannula or mask that is worn on the face. Some children are placed in an oxygen tent. A caregiver will decide which way is best to give oxygen to your child. You or your child should not take the oxygen off until a caregiver has said it is OK.
Your child may need to rest after surgery. Caregivers will tell you when it is safe to let your child move around and play.
Protecting the incision:
Your child's mouth needs to be protected 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 arms of your child's shirt may also be pinned to the bed. This will stop your child from rubbing his face with his hands or upper arms. Arm boards may need to be used at home as well. 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 this 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. Your child should not lie or sleep on his stomach (tummy). He should lie on his back or side. This helps keep your child from rubbing his face on the sheets and hurting the surgery area.
Feeding your child:
- Your child may start drinking liquids after surgery when he is fully awake. 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.
What is Intake and Output (I and O)?
- You may need to help your child's caregivers keep track of how much your child eats and drinks. You may also need to help caregivers keep track of how much your child urinates. Caregivers may also want to know if your child has had a bowel movement (BM).
- You may need to save your child's diapers so a caregiver can weigh them. This will measure how much your child has urinated. If your child does not wear diapers, your child may need to urinate into a measuring container in bed or in the toilet. Do not throw away diapers or flush urine down the toilet before asking your child's caregiver.
- Your child may be weighed often, even daily. This is another way caregivers keep track of your child's liquid and food intake.
What are the signs of dehydration?
Because of the cleft palate and the feeding problems it may cause, your child may become dehydrated (d-HI-dra-ted). Dehydration happens when your child's body is too dry from not getting enough liquids. Dehydration is a serious problem. Tell a caregiver if you think your child may be dehydrated. Some signs you may see if your child is dehydrated include:
- Little or no urination in 8 hours.
- In babies you may see the soft spot on the top of the head (the fontanel) become sunken (curve inward).
- No tears when crying.
- Chapped (cracked and dry) lips.
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