Updated: Nov 29, 2022
Have you recently found out you will be having a baby with a cleft lip or palate? Are you wondering what to expect?
Any time we learn one of our children will be born with a special condition, we want to find out as much as possible to be prepared to make the best parenting decisions we can. Luckily, there are many resources to learn about what we will be facing.
You may be wondering exactly what a cleft lip/palate is.
A Cleft Lip is when only the lip is affected. The cleft is often small and seen as an indentation on the lip. This is known as a partial or incomplete cleft. Sometimes, the cleft may go all the way to the nose. This is known as a complete cleft.
A Cleft Palate occurs when the two parts of the skull that form the hard palate do not fuse together. The soft palate also has a gap. A complete cleft palate may have a gap in the jaw, whereas an incomplete cleft looks like a hole in the roof of the mouth.
A cleft lip/palate is often discovered during the 20-week anatomy scan, though it may not be noted until birth. If the cleft is noticed early, it is good to identify the doctors who will be helping your baby. Here is an online tool you can use to find specialists in your area. http://www.cleftline.org/parents-individuals/team-care/
You might look into lactation consultants, as they can be a huge help when deciding how to best feed your baby.
You may also start looking into pediatric dentists, speech therapists, and ENT’s in your area with experience with cleft lips/palates.
What to Expect at Birth
After birth, the primary concern is feeding. Because of the cleft, the opening into the mouth from the nose causes a leak of air that makes it hard for the baby to suck effectively. If the infant only has a cleft lip, the baby can usually suck well from the breast or bottle.
If the gum and lip are involved, the baby’s suction may be inhibited, and the baby may need a bottle with a faster flow nipple.
Breastfeeding is possible but may require different feeding positions so that the mother’s breast tissue can fill the gap in the lip or gum. Unless the cleft palate is in the back of the mouth and small, breastfeeding can be challenging. Supplementing with a bottle will be needed if breastfeeding does not supply enough nourishment. The takeaway is that most babies can breastfeed, but it will require patience and practice.
Babies can also be bottle-fed. There are a few special bottles that can make feeding easier. Some examples include the Mead Johnson Cleft Palate Nurser and the Haberman feeder. However you decide to feed your baby, a lactation consultant is always a great resource for help.
Surgical Treatment to Expect
Most cleft lips/palates will be surgically fixed within the first year of life. There are a few exceptions to this, including congenital heart disease or airway compromise. Each case is different. Cleft lips are usually repaired around 3 to 6 months of age and cleft palates at 6 to 9 months, but again every child is different.
Surgery is done to create a palate that is effective for speech. Some children may continue to have a nasal voice, and some may develop one later on.
Children may need additional surgeries as they grow older and their facial structure changes. Procedures such as pharyngoplasty (done to improve speech) and alveolar bone grafts (performed to provide stability for permanent teeth) may be done. A bone graft may be done between 6 and 10 years old. It is done to close gaps in the bone or gums near the front teeth.
As children near their teenage years, they may desire to make their scars less noticeable. They may also want to fix their bite, which can be done with orthognathic surgeries. These procedures can help speech, breathing, under/overbites, and appearance.
Other Medical Concerns
Middle Ear Fluid and Hearing Loss
Many children born with cleft lips/palates are prone to the buildup of fluid in the middle ear. Because the fluid can’t pass through the Eustachian tube as it should, ear infections and sometimes even hearing loss can occur. Some kids will need ear tubes placed in their eardrums to help drain the fluid and improve hearing. It is recommended they have their ears, and hearing checked at least twice a year, and possibly more if they are having problems.
Children with cleft lip/palate often have dental issues. Common problems include teeth out of position and small, missing, or even extra teeth. They may also have defects in the gums which can cause issues when the permanent teeth come in. It is important to find a pediatric dentist who has experience with cleft lip/palate.
It is important to start and maintain good dental habits. Brushing and flossing daily is a necessity.
Several kids will have some type of orthodontic treatment. Some may begin as early as six years old. Many times, the treatment will begin with a palatal expander (an appliance that makes the upper palate wider). They may need braces to correctly position the teeth as they come in.
Sometimes, the child will be missing a permanent tooth. This can be fixed with removable appliances or dental implants as they near adulthood.
Children with cleft lip typically have fewer speech issues than those with cleft palate. Approximately 1 out of every five children with cleft palate have speech issues after surgical repair. Usually, this presents as the child having a hypernasal voice (which sounds like they are talking out of their nose). This happens because the palate does not move enough to prevent the air from leaking out of the nose.
A speech-language pathologist can test a child’s language development and offer treatment if needed.
Social and Emotional Concerns
Some children may have a hard time communicating with their peers. When this happens, they may become angry and resentful but may not always be able to explain what they are feeling. There are many ways to help them express themselves. Being patient and calm and letting them talk about what they are feeling can help immensely.
If your child is being teased, it is important to teach them ways to handle themselves. Some children may be interested in talking to their class about their cleft lip/palate. If they would like to do that, inviting a member of the care team may make everyone feel more relaxed and confident.
In the end, having a child born with a special condition takes extra work. Once the initial treatment plan is moving forward, you will gain confidence in your parenting ability you never knew you had.
ABOUT THE AUTHOR
Vicky Warren is the mother of four boys. Between swimming lessons and fake light saber fights, she is a writer/blogger for hire, specializing in parenting, lifestyle, and medical writer with a nursing background. She is the author and curator of content at Living the Diagnosis.com. You can find her on Twitter, Pinterest, and Facebook.