Cleft Lip and Palate Guide for Parents
Updated: Oct 16, 2020
Parents and caregivers of children, you are not alone! A lot of times, we are given challenges that we are not prepared for, or even aware of. Being a parent to a Child with Cleft Lip and/or Palate can be one of them. It can be a mix of delightful, joyous moments but also stressful times.
You will face obstacles related to your child's feeding, speech, surgeries, hearing, etc. It is imperative that you are aware of the different treatment procedures so that the child receives timely care. We, at SOUNDERIC, feel it is our responsibility and duty to provide you with all the information, resources and services, for the same. We are motivated and equipped to take this journey with you, one step at a time. Therefore, we have curated a list of FAQs to provide you with all the information you need about Cleft in Lip and/or Palate.
1. What causes cleft lip and cleft palate?
There can be three primary causes for Cleft lip and Cleft palate:
Congenital defects - they involve a disruption in the formation of the fetus’s (baby) top lip and/or roof of the mouth.
Genetic conditions - resulting from an error in the genes which is passed in the baby from the parent.
Pregnancy factors - Tobacco and alcohol consumption during pregnancy, diabetes, obesity, older mother, certain medications.
2. Do children with a cleft lip always have a cleft palate (or vice versa)?
No, a child can be born with just a cleft lip, just a cleft palate or a combination of both.
Furthermore, they can be divided into Unilateral, where only one side has a cleft, and
Bilateral, where two sides are affected. This classification includes lip, palate or a combination of both.
3. Can my child’s cleft lip and palate be repaired?
Yes, your child’s cleft lip and palate can be repaired with surgical procedures. Throughout these procedures, Speech and Language Therapy should also be given priority.
The surgical procedures that take place are: 1. Lip Repair Surgery, to repair the Cleft in the lips.
2. Palate Repair Surgery, to repair the Cleft in the palate.
3. Velopharyngeal Insufficiency Surgery, to fix the nasal sounding speech of the child. 4. Orthodontic treatment, if required, to repair the child’s teeth.
The info-graph will explain in detail regarding the same.
After the operation, your child’s mouth and nose will be near normal in appearance and should function normally.
4. When is Cleft Lip and/or Palate diagnosed?
In most cases, a prenatal ultrasound can detect cleft lip/cleft palate as early as 16 weeks into a pregnancy. The diagnosis is then confirmed at birth with a detailed visual assessment and physical examination.
Sometimes, a baby may have a mild instance of cleft palate that only involves her soft palate — the fleshy tissue at the back of her mouth. This cleft may not show up on ultrasound, and may not be noticeable until the infant experiences difficulty feeding. At that point, a speech therapist or your doctor will perform a comprehensive exam to identify the exact nature of the problem.
5. What precautions do I need to take after my child's cleft palate repair?
For the first three weeks after your child's surgery, the cleft palate repair is not strong enough to resist damage that could be caused by foreign objects or even fingers.
In order to prevent injury, promote healing, and maintain your child's comfort, it is important that you follow these guidelines for the first three weeks after surgery.
The precautions that should be taken are as followed:
1. Feed your child carefully using a cup or the side of a spoon to drop fluids and food into the mouth. Do not allow the spoon to touch the roof of the mouth. Do not allow your child to chew on anything. Remember, no bottles or pacifiers. You should give your child soft foods, using the side of a soft-tipped baby spoon.
2. After each feeding, be sure to rinse your child's mouth with water. Rinsing is very important, especially for the first 10 to 14 days after surgery.
3. Your child may take out some food and liquid through her nose for up to three months after the operation. This is normal. It takes time for the swelling to diminish and for the muscles in the palate to begin working properly.
4. Do not give any hot food or hot fluids.
5. Please note: Your doctor or speech pathologist will meet with you after surgery to talk about feeding plans. Since each child is different, the plan will be specific to your child.
6. You can expect your child to have mild to moderate pain for a few days. 7. Any object your child puts in his/ her mouth could ruin the repair. Therefore, your child must wear arm restraints for the first ten days after surgery. These must not be removed unless of an emergency or with physician contact.
You'll be given further post-operative instructions by your doctor when your child is discharged.
6. As my child gets older, will he need another operation on his palate?
Some children who have undergone a cleft palate repair will need a second operation to correct “nasal” sounding speech. The most common procedure used to fix this problem is called a pharyngeal flap, which is performed when the child is about 5 years old, to fix the Nasal sounding Speech. However, if it still persists, you can contact a Speech Therapist who will help you with further management.
7. Will my child have a Hearing Loss, with Cleft Lip and/or palate?
Children with cleft palate are more likely of developing middle ear fluid, thus recurring chronic infections and hearing loss. Many children with a cleft palate will require tubes, known as grommets, to be inserted into the eardrum to allow drainage of fluid from the middle ear. Therefore, Hearing Loss may be temporary, or it may persist if not treated. Since children with cleft palate are at a higher risk of developing hearing loss, their hearing should be monitored closely.
An Audiologist is trained and has the equipment to assess your child’s hearing. Tets that are conducted are ABR (Auditory Brainstem Response), Tympanometry, OAE and other play-based audiometry, etc. Your child will undergo her first hearing test early in life and will be tested again prior and post the operation to repair her cleft palate.
8. Will my child need to have a Dental Procedure?
Children with cleft lip and palate often have missing, misshaped or irregularly aligned teeth. They may also be at a greater risk for cavities since they often have weak areas in their enamel and thicker, less effective saliva.
If required, the child will go through:
1) Orthodontic Treatment:
a Dental procedure to align the teeth, after 5 years of age.
2) Alveolar Bone Grafting:
a procedure to add bones to the gums, after 6 years of age.
To know about the feeding issues seen in children with cleft lip and palate read our next blog.
9. What about the social and psychological problems that the child can face?
As the child enters school he might be teased due to facial scarring post surgeries or because he speaks differently. Children may become concerned with how they look and talk. Some children are affected more by their facial appearance than others. Parents would want to support their child and help them develop a good self-concept.
1. All the kids like to see their pictures from infancy, so make sure you take them and share them and celebrate their every milestone.
2. When the kid starts school they are often questioned and teased by other kids. Parents can role-play actual questions and answers with the child at home, using age-appropriate language so that the child is better prepared.
3. You can teach the child to respond by ignoring the remark, responding with a joke or by teaching the child to speak up. Educate them that when responding to a bully, crying or withdrawing reinforces the teasing.
4. Repeated positive reinforcement from parents and other family members help in developing self-confidence in the child. A teenager with a cleft said what helped her get through these years was the love and support of her parents who really listened to her problems and constantly encouraged her for all her accomplishments.
5. A child with a cleft may have to work a little harder for people to look past his cleft. Don't try to shelter your child away from others, in fact, exposing them to other children early on helps in building their social skills.
6. Also reminding the kids that there are others too who have similar problems as them. They don't feel alone and are able to accept their differences well.
10. How can parents support themselves emotionally?
Parents your mental health has a direct impact on your child's well being. They look at you for support. Your reactions and emotions have a major impact on them.
Do not get a burnout. Take time out, rest and exercise.
Take help from your partner. Do not shy away in asking for help from your friends and family.
Play with your baby, cuddle him, spend time with him. This will help you in forming a bond with the baby.
Reach out to your cleft team. They will answer all your queries and concerns. You would be better prepared if you are aware of the timeline of the surgeries and other treatment options.
Join the parent support group for children with clefts. Listening to parents who have had a similar experience will prepare you better for what to expect. Also, they will be able to give you practical tips and advice that has worked out for them.
Reach out to a mental health counsellor or a therapist if you need help.
11. What are the different organizations in India for cleft lip and palate?
1. Transforming Faces https://transformingfaces.org/where-we-work/india/
2. Smile Train India https://www.smiletrainindia.org/
3. Mission Smile https://www.missionsmile.org/
4. CleftSmile.org http://www.cleftsmile.org/international-resources/india/
5. Operation Smile India https://www.operationsmile.org/approach/where-we-work/india
6. Akila Bharatha Mahila Seva Samaja (ABMSS) https://www.abmss.in/aboutus-page
The Rights of Persons with Disabilities Act, 2016 is the disability legislation passed by the Indian Parliament. It recognises Speech and Language Disability as one of the 21 disabling conditions for which Indian citizens can claim disability benefits. If you want to apply for disability certificate under the category “maxillofacial anomalies”, you should approach a government hospital in your area. You can read more about it here-
Stay tuned for our next blog to know about the feeding issues seen in children with cleft lip and palate.
To know more about Feeding Issues in children with cleft, you can check out https://www.sounderic.com/post/feeding-in-cleft-lip-and-palate
Speech language issues in children with Cleft Lip and palate are explained here https://www.sounderic.com/post/speech-and-language-issues-in-cleft-lip-and-palate