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WHAT YOU SHOULD KNOW:
- Cleft lip is a common birth defect (problem). With cleft lip, the skin on your child's upper lip has not grown together normally. Clefts may look different from one child to another. Some clefts may only be a small notch in the pink part of the lip. Other clefts may have separation all the way into the inside of the nose. The cleft (opening) may be on one or both sides of your child's lip. If it is on one side of the lip, it is called a unilateral (u-nih-LAH-ter-al) cleft. If it is on both sides of the lip it is called a bilateral (bi-LAH-ter-al) cleft.
- In many cases, caregivers do not know why cleft lip happens. Your child may be more likely to have a cleft lip 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.
What about feeding my child?
Feeding a child with a cleft lip can be difficult. This is not your fault. If you are calm and patient, you may find that feeding your child is easier. Being relaxed in a quiet room may also help your child from becoming upset during feedings. You may need special bottles, nipples, and other supplies to make feeding your child easier. The special supplies may also help decrease the risk of your child choking during feedings.It is important that you teach others how to feed your child. Feeding a child with a cleft lip can take extra time. You may need help with this. Feeding times can also be stressful, so it is important to take a break sometimes. Having others that can feed your child will help you be able to do this.
- 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 the lungs (choking) instead of the stomach. Sitting also helps to keep liquids from coming out of his nose or from going into his ears.
- Feed your child slowly. A child with a cleft lip can swallow a lot of air when feeding, so burp him often. 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 dry your child's face when needed.
- Your child may be very tired after eating. This is because the cleft lip may cause your child to work harder to suck and swallow.
- During feedings, try not to take the nipple in and out of your child's mouth. Doing so may make your child cry, and cause your child to swallow liquid into his lungs. This can be a serious problem.
- Never “prop” a bottle or lay your child down with a bottle. This may increase the chance of choking, cavities, and ear infections.
- Your child should be watched by an adult at all times during feedings.
May I breast feed my child?
- It is OK to breast feed a child with a cleft lip. Breast feeding helps you and your child bond (form a relationship) with each other. Breast milk has the the right kind of nutrition that your child needs to grow. It also gives your child some resistance to infections (in-FEK-shuns).
- Your child may sometimes swallow too much air when feeding because of his cleft lip. This may cause burping, and may cause milk to come out of his nose. Breast feeding may help your child eat better because the breast may help fill the cleft. Your child may then be able to suck better. Breast feeding may also decrease the chance of ear infections, and help speech development later.
- Some children with a cleft lip are not able to breast feed. It is not your fault if you cannot breast feed your child. You can use a breast pump and give your child breast milk with a special bottle or syringe. Caregivers will work with you to find the best way to feed your child.
What about bottle feeding my child?
- There are many kinds of bottle nipples made for children with cleft lips. Caregivers will work with you to find the best nipple for feeding your child.
- You may need to feed your child with a soft bottle. This may help if your child has trouble sucking. Gently squeeze the bottle so milk comes slowly out of the nipple.
- If your child has trouble sucking, you may need to cut a larger hole in the nipple. This will help your child get enough liquid during feedings. You may need to be shown how to do this.
- You may be taught how to use a rubber-tipped syringe to feed your child. The rubber tip will be long enough to reach into the back of your child's mouth. This will help to keep the liquid from coming out of your child's nose.
- Your child may gain weight more slowly than a child without a cleft lip. This is especially true in the first months of your child's life. You may need to take your child to see his caregiver often because of his cleft lip. Tell the caregiver how often your child is eating and drinking, and how much is being eaten each time.
- Caregivers will keep track of your child's weight gain. They will help you if you are having trouble feeding your child. Your child should weigh about the same as other children his age by the time he is 12 to 18 months old.
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.
Decrease the chance of ear infections:
Saliva (spit) and milk may go into your child's ears easily because of his cleft lip This may cause ear infections. Keep your child in an upright position during feedings. His head should be higher than his stomach. Never "prop" a bottle or lay your child down with a bottle.
Orthodontic (or-thuh-DAWN-tik) and dental care:
Your child may have problems with cavities and gum infections because of his cleft lip. Ask caregivers how often you should take your child to the dentist.
Your child may have trouble speaking normally. Even after cleft lip surgery, your child may need help learning how to talk in a normal way. Your child may need to work with a speech therapist for many years. A speech therapist is specially trained to help your child learn to speak better.
Your child may feel bad 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 lip as he grows. Having to see caregivers may make your child feel different. Encourage your child to share his feelings with you. Call your child's caregiver if you think your child is having trouble coping.
Fixing the Cleft:
Surgery may help your child by closing the cleft lip. Talk with caregivers to find out when your child can have surgery. Surgery is done as early as possible to keep your child from having problems eating, growing, and talking. Your child's health, weight, and type of cleft will help caregivers decide when to do surgery. If the cleft lip is not fixed, your child could have problems growing and talking. Your child may get many ear infections, which may cause hearing problems. Without surgery, your child's teeth may not come in the right way. Your child may need more than one surgery to fix his lip.
You may feel sad, ashamed, or angry because your child has a cleft lip. 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 lip. Talk about your feelings with a caregiver or with someone close to you. Ask caregivers about support groups for parents of children with cleft lips. 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 lip 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(tm) handout on how to stop smoking.
CONTACT A CAREGIVER IF:
- Your child has a fever.
- 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.
- 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.
- You have any questions or concerns about your child's medicine or care.
SEEK CARE IMMEDIATELY IF:
Seek care immediately if your child can not breathe or his/her lips, fingernails, or toenails turn blue. This is an emergency! You should call (0) operator or 911 to get help right away.
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