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.
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.
- Your child may have problems sucking and gaining weight because of the cleft lip. It may take a lot of extra time to feed your child. You may need to use special bottles, nipples, and other supplies to make feeding easier. One or more surgeries may be needed to fix the cleft lip.
- 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. Your child may also have problems talking because of the cleft lip.
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 a caregiver 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 lip. 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 lip.
- 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 is Intake and Output (I and O)?
- Your child's cleft lip may cause problems sucking and swallowing. This may lead to dehydration (d-hi-DRA-shun). Dehydration means not having enough water in the body to be healthy. This must be treated as early as possible. Your child's caregivers may put your child on I and O to keep track of his fluids. While your child is on I and O, how much he drinks and urinates will be measured.
- 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 nutrition intake.
What are the signs of dehydration?
Because of the cleft lip 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.
What else may be done to help my child?
Feeding, speech, and other problems are common in a child with a cleft lip. A team of people working together can help you deal with these problems. The team may consist of 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, nose, and lip 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.
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.
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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.