Simply put, cleft lip and cleft palate are openings in a baby's upper lip or the roof of the mouth. These are considered birth defects/congenital abnormalities . This means that these conditions occur while the baby is still in the womb, or rather during fetal development, when the facial parts are connected. This happens when the tissues that make up the upper lip and the upper palate do not come together properly. But don't worry, both of these conditions can be corrected to a large extent through surgery.
What is a cleft lip?
Our lips begin to form between four and seven weeks after conception. The tissues from both sides of the head come together in the middle of the face to form the lips and mouth. Cleft lip occurs when these tissues that make up the lips do not fully join together.
What happens is that a small or large gap forms between the two sides of the upper lip. This cleft can sometimes be a small crack, or it can be a large gap that extends all the way to the nose. This separation may also affect the gums or palate.
What is Cleft Palate?
Your palate develops between six and nine weeks of pregnancy. A cleft palate is a split or opening in the roof of your mouth that develops during this time. It can affect the hard palate at the front, the soft palate at the back, or both.
Cleft lip and cleft palate can occur on one side of the mouth or on both sides. Because cleft lip and palate develop separately, the following conditions can occur:
- Cleft lip without a cleft palate.
- Cleft palate without a cleft lip.
- Both a cleft lip and cleft palate - This is the most common.
How common is this condition?
In fact, these conditions called cleft lip and cleft palate are also seen in Sri Lanka. In America, these are one of the most common birth defects.
According to the data there (US Centers for Disease Control and Prevention):
- About one in every 1,600 babies is born with both a cleft lip and palate.
- About one in every 2,800 babies is born with a cleft lip and not a cleft palate.
- About one in every 1,700 births is born with a cleft palate, not a cleft lip.
Cleft lip (with or without cleft palate) is more common in male babies. Cleft palate alone (without cleft lip) is more common in female babies.
What are the causes of cleft lip and palate?
Often, it is difficult to pinpoint the exact cause of a cleft lip or palate. It is not something that parents can prevent. Most scientists believe that the condition is caused by a combination of both genetic and environmental factors . If someone in the family, such as a sibling, parent, or other relative, has the condition, it seems that the newborn baby has a slightly higher chance of developing it as well.
What are the risk factors?
If you use certain medications during pregnancy, your baby may be at slightly higher risk of developing a cleft lip/palate. For example:
- Some medications given for conditions such as epilepsy (Antiseizure medications).
- Medication containing `(Accutane®)` for acne.
- Methotrexate is a drug used to treat diseases such as cancer, arthritis, and psoriasis.
Also, other factors related to the mother can affect this:
- Folic acid deficiency.
- Obesity means being overweight.
- Tobacco use during pregnancy.
- Substance use disorder.
- Exposure to certain viruses or chemicals during pregnancy.
Is this genetic? (Is cleft lip/cleft palate genetic?)
Some studies suggest that there is a genetic link between cleft lip and cleft palate. For example, if you or your partner had a cleft lip or cleft palate at birth, your baby has a 2% to 8% chance of having the condition. If you already have a child with a cleft lip/cleft palate, your next child is slightly more likely to have the condition.
What are the complications of this condition?
Babies born with a cleft lip or cleft palate may have difficulty feeding (both bottle-fed and breast-fed) . They may also have difficulty speaking. Often, fluid collects behind the eardrum, causing hearing loss . Some babies also have dental problems .
How to diagnose cleft lip and palate?
Most of the time, cleft lip can be detected during prenatal ultrasound . This is because the cleft lip can cause physical changes in the baby's face. However, if there is only a cleft palate without a cleft lip (Isolated Cleft Palate), it is a little more difficult to detect this way. Only 7% of such cases are detected on ultrasound.
If this is not detected on ultrasound, the mouth, nose, and palate can be examined after the baby is born to determine if there is a cleft lip or palate.
In some cases, the doctor may recommend a test called amniocentesis , which involves taking a sample of the amniotic fluid surrounding the baby to check for other genetic conditions.
Can a cleft lip be diagnosed before birth?
Most of the time, doctors will detect a cleft lip during your 20-week ultrasound scan (Anatomy Scan), which is the scan done between 18 and 22 weeks of pregnancy. Sometimes it can be detected as early as 12 weeks. However, detecting a cleft palate on an ultrasound is a bit more challenging.
What are the treatments for cleft lip/palate?
Cleft lip and/or cleft palate are treated with surgery . The exact details of this treatment depend on the size of the cleft, the child's age, and any other special needs or health conditions they have. Your child will have this surgery in a hospital, under general anesthesia , which means they are completely asleep.
Cleft Lip Repair
A cleft lip may require one or two surgeries. The first surgery is usually done when your baby is between 3 and 6 months old. This surgery will repair and close the lip. If a second surgery is needed, it is usually done when your baby is around 6 months old.
There are several techniques that can be used before surgery to improve the results. These are noninvasive methods that can significantly change the shape of your baby's lips, nose, and mouth. For example:
- A lip-taping regimen can help narrow a baby's cleft lip.
- A nasal elevator helps to shape the baby's nose into a more natural shape.
- A Nasal-Alveolar Molding (NAM) device helps to shape the lip tissue more favorably for surgery.
Cleft Palate Repair
Cleft palate surgery is usually done when a baby is about 12 months old. This helps to create a functioning palate and reduce the chance of fluid accumulating in the baby's middle ear. To prevent this accumulation, children with cleft palates usually have special tubes placed in their eardrums to help drain the fluid. Their doctors will check their hearing about once a year.
About 40% of children with cleft palates will need further surgery to improve their speech . A speech pathologist will evaluate your child's speech between the ages of 4 and 5. He or she may use a nasopharyngeal scope ( a camera that is inserted through the nose) to look at the movement of the tongue and throat. If your child needs surgery to improve their speech, it is usually done around the age of 5.
Children with a cleft that affects the gum line may also need a bone graft between the ages of 6 and 10. This procedure fills in the upper gum line, providing support for the permanent teeth and stabilizing the upper jaw. Once the permanent teeth come in, the child will often need braces to straighten the teeth and a palate expander to widen the palate.
Your child may need further surgery for:
- Improve the appearance of the lips and nose.
- Close the openings between your mouth and nose.
- Make breathing easier.
- Stabilize and straighten your jaw.
Surgery can carry risks such as bleeding, infection, and damage to nerves, tissues, or other structures. However, cleft lip and palate surgery is usually successful and carries a low risk. A small pink scar is left after cleft lip surgery, which should gradually fade as the child grows.
What are nonsurgical treatments?
Children with cleft lip or cleft palate may need treatment beyond surgery. Other treatments their doctors may recommend include speech therapy and orthodontic treatment .
Who is treating these children?
Because of the number of oral health and medical problems associated with a cleft lip or palate, a comprehensive care plan is developed by a team of healthcare providers . Your child's treatment usually begins in infancy and often continues into young adulthood.
Their healthcare team may include:
- A Pediatric Plastic Surgeon.
- A pediatrician.
- An otolaryngologist (ear, nose, and throat specialist).
- Lactation Support Providers to help with early feeding.
- An orthodontist is a dental specialist who straightens and moves teeth into the right position.
- A dentist or pediatric dentist who provides general dental care.
- A specialist in making artificial teeth and dental appliances (Prosthodontist).
- Speech-Language Pathologists (SLPs) assess speech problems.
- An audiologist who tests and monitors hearing.
- A social worker/psychologist who supports the family and checks to see if there are any problems with the child's adjustment.
- Genetic counselors who help parents and adult patients understand the possibility of having children with cleft palate/lip in the future.
Can cleft lip/palate be prevented?
There is no way to completely prevent your baby from having a cleft lip/palate. However, you can reduce the risk by avoiding cigarettes, alcohol, and certain medications during pregnancy. Talk to your doctor for more information.
What will the future of these children be like?
Treatment can take years and may require multiple surgeries. But many children with these conditions have normal childhoods . With treatment, speech and eating difficulties can improve. Some people may be more sensitive about the shape of their lips or the scars. Talk to your child's doctors about how they can support you over the years.
Can a baby with a cleft lip/palate be breastfed?
It is possible to breastfeed your baby with a cleft lip and/or palate. However, you will need help from a trained medical professional. Successful breastfeeding depends on several factors, such as:
- The type, size, and location of the crack.
- The position you are breastfeeding.
- Whether your baby has a syndrome related to this (which may have other symptoms that interfere with breastfeeding).
- The breastfeeding education and support you receive.
Babies use suction to suck milk from the breast. A cleft lip and/or cleft palate may prevent the baby from using this suction.
Research shows that some babies with only a cleft lip can develop enough suction to successfully breastfeed. It is also possible that babies with small clefts that only affect the soft palate can develop the necessary suction.
However, it is usually difficult to develop a grasping power in babies like this:
- For babies with both cleft lip and palate.
- For babies with large cracks affecting the hard and/or soft parts of the skull.
This baby may have difficulty developing a sucking ability because there is no proper separation between the inside of the nose and the inside of the mouth.
If your baby can't latch on well, trying to do so can be very tiring . They can have nasal regurgitation or reflux. Some babies may not get enough milk, which can cause feeding and growth problems.
Support for breastfeeding a baby with cleft lip/palate
The first thing to know is that you are not alone . Many other families are facing this situation, and they are also wondering how to manage breastfeeding or other options.
Fortunately, lactation consultants and breastfeeding specialists, including breastfeeding specialists, are available to help you find ways to breastfeed your baby. These people can help you even if you can't breastfeed. Make an appointment to see them as soon as possible, even while you're still pregnant. You can learn about how to care for your baby and what to expect.
A lactation consultant can help you with these things:
- Determine if breastfeeding is possible.
- Manage your milk supply.
- Learn how to express breast milk, either by hand or with a breast pump.
- Find the best breastfeeding position that suits you and your baby.
- Make sure your baby is getting enough fluids.
- Keep an eye on your baby's weight gain and growth.
- If necessary, manage additional feedings (formula or donor breast milk substitutes).
- Help with breastfeeding for you and your baby after cleft lip/palate surgery.
Support if you are unable to breastfeed
It's important to know that despite everyone's best efforts, your baby may not be able to breastfeed directly from the breast. This may still be the case after surgery. However, your lactation consultant can help you find other ways to feed and bond with your baby.
For example, your doctor can help you with expressing breast milk . This involves expressing breast milk (either by hand or with a pump) and giving it to your baby using a spoon, cup, bottle, or syringe. Some bottles are designed to give your baby a little extra help with sucking. Your doctor can help you choose the right bottle for you.
Breastfeeding provides your baby with the important nutrients in your milk. Breastfeeding may also reduce your baby's risk of ear infections , which are common in babies with cleft lip/palate.
Your doctor may also encourage you to try to breastfeed your baby, even if your baby isn't getting enough milk to feed. Doing so can help maintain your milk supply. It's also an important way to comfort and bond with your baby.
What dental care does your child need?
In general, children with clefts have the same dental needs as other children. However, children with cleft lip and palate may have missing teeth, a change in the shape of their teeth, or a misalignment of their teeth. Here are some recommendations:
- Early Dental Care: Your child needs good nutrition, proper brushing, and fluoride treatment to keep their teeth healthy. As soon as their teeth start to come in, brush your child's teeth with a small, soft-bristled toothbrush. If this toothbrush is not able to clean their teeth properly due to the different shape of their mouth and teeth, a dentist may recommend using a soft sponge with mouthwash. Ask your child how often they should take their teeth for dental checkups.
- Orthodontic Care: After the permanent teeth come in, an orthodontist will assess your child's short-term and long-term dental needs. Many children with a cleft palate will need a palatal expansion around the age of 6 or 7. After all the permanent teeth have come in, an orthodontist can straighten the teeth with braces. Your child may also need orthodontic care to prepare for orthognathic surgery.
- Prosthodontic Care: A prosthodontist can replace missing teeth with a dental bridge or create special devices called speech bulbs or palatal lifts to help improve speech. The prosthodontist works in coordination with an oral or plastic surgeon and a speech therapist.
What are the problems associated with cleft lip and palate?
Children with clefts often have eating problems, hearing loss, and speech problems . Children may also have dental problems or self-esteem issues.
- Eating Problems: When there is a cleft or opening in the palate, food and drink can come back up from the mouth through the nose. Some babies have difficulty breastfeeding or bottle-feeding because they cannot suckle properly.
- Hearing Loss: Children with cleft palate are more likely to develop glue ear, which can lead to hearing loss if left untreated.
- Speech Problems: Children with cleft palates may have difficulty speaking. Their voices may not be heard properly, and their speech may be difficult to understand. Not all children have these problems, and they can be corrected with surgery.
- Dental Problems: Children with clefts are more likely to develop cavities, lose teeth, develop incorrectly, or shift their positions.
They are more likely to develop defects in the alveolar ridge, the bony part of the upper gum where the teeth are located. A defect in this alveolar ridge can cause:
- Permanent teeth can move, become loose, or even rotate.
- It can prevent the eruption of permanent teeth.
- The formation of the alveolar ridge can be prevented.
- The canine teeth and incisor teeth that are emerging may fall out prematurely.
- Emotional or Social Problems: Children with clefts may experience feelings of inferiority or shame about their appearance, even at a young age. This can lead to emotional, social, or behavioral problems at school, and can affect their self-esteem.
You may have learned about this condition during an ultrasound scan while your baby was still in the womb, or after your baby was born. However, having a cleft lip or palate can be a very stressful situation that is hard to put into words. You may be worried about the surgeries your baby will need, how he or she will recover, and what his or her childhood will be like. Remember, your baby's medical team is here to help your entire family (including you). Don't hesitate to share any questions or concerns you have with them. That way, you will be better equipped to navigate the journey ahead.
The most important things we should take home from this story (Take-Home Message)
It's normal to feel overwhelmed when you find out your baby has a cleft lip or palate. But remember, you're not alone .
The important thing is that there are effective treatments for both of these conditions. Yes, it takes time and may require multiple surgeries. But with proper medical care and the love and support of your family, your child can live a happy, healthy life like everyone else.
Special attention will need to be paid to things like feeding in the early stages and talking later. There are a large number of people, including doctors and speech therapists, to help with all of that.
Even at a young age, your baby may feel a little sad about his appearance. At that time, it is very important to understand him, talk to him lovingly, and comfort him. Discuss all this with your doctor. They will guide you exactly.
So, stay strong and follow the doctors' advice as you go through this journey. Your baby will recover quickly and see the world with a beautiful smile!
` Cleft lip, cleft palate, birth defects, baby health, surgery, speech therapy, breastfeeding
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