I have been working with families who have children with cleft lip, cleft palate, craniosynostosis, and other congenital craniofacial differences throughout my career. To see the joy that families experience as their child is restored in their appearance and functionality is truly rewarding. It is a privilege to participate in the journey from the very beginning to the final treatments and watch the children blossom into the amazing individuals and adults that they are.

Many people are surprised when I tell them about clefts and craniofacial conditions and what treatment entails. Many still think that it is a condition only seen in “developing” countries but not in the U.S. or other “developed” countries. This could not be further from the truth. In the United States, about 1 in 700 babies are born with cleft, and about 1 in 2500 are born with craniosynostosis. That is a lot of children here in the U.S. born with cleft and craniofacial conditions regardless of age, race, or socioeconomic class. Another fact that astonishes people is when they learn that most clefts are not fixed by just one surgery as shown on TV. Rather, these conditions usually require multiple surgeries over their lifetime of the individual from birth to adulthood.

The wonderful news is that many children go on into adulthood to have wonderful and fulfilling lives. Here are 7 of the most common things people as, including parents, patients, families, and friends of children and adults with cleft and craniofacial differences.

1. Is It Really Common To See Cleft Lip, Cleft Palate, Craniosynostosis And Other Craniofacial Conditions Today?

Cleft lip and cleft palate are the most common types of craniofacial differences and they occur in 1 in 700 births in the United States. Craniosynostosis occurs in 1 in 2500 births in the U.S. So, these conditions are not as rare as people may think, especially when you consider the population of the U.S. and the number of children born daily.

Cleft lip is a separation that happens either in the lip or the gum line where the teeth will eventually develop. In cleft lip, the lip does not completely form. The degree of the cleft lip can vary greatly. It can be mild, which would be a notching of the lip, or it can be severe with a large opening from the lip up through the nose.

Cleft palate happens when the roof of the mouth does not completely close. This condition leaves an opening in the mouth that can extend into the nasal cavity. The cleft may involve either the right, left, or both sides of the palate. It can extend from the front of the mouth (hard palate) to the back of the mouth toward the throat (soft palate).

A child can have a cleft lip alone, a cleft palate alone, or a cleft lip and palate.

Craniosynostosis is another common birth defect in which the bones in a baby’s skull join too early. There are many separate bones in the skull and these bones are separated by gaps of cartilage-like material called sutures. In a baby with craniosynostosis, one or more of the sutures closes too early. When these sutures close prematurely, it causes the skull bones to fuse together early. So, as the baby’s brain and face grow, these prematurely fused bones can cause the skull and face to become misshapen. When the suture “closes” early, it can also limit or affect the growth of the baby’s brain.

2. What Causes These Particular Birth Defects?

According to the Centers for Disease Control and Prevention (CDC), the causes of orofacial clefts among most infants are unknown. However, it is thought that some children have a cleft lip or cleft palate because of changes in their genes. Cleft lip and cleft palate are thought to be caused by a combination of genes and other factors, such as things in the environment that the mother comes in contact with, mother’s diet, certain medications she uses during pregnancy, or other factors in father and mother’s history. Many times, the cause of the cleft is unknown even in healthy parents and during otherwise healthy pregnancies.

The CDC reports on important findings from research studies about some factors that increase the chance of having a baby with an orofacial cleft:

• Smoking―Women who smoke during pregnancy are more likely to have a baby with an orofacial cleft than women who do not smoke.
• Diabetes―Women with diabetes diagnosed before pregnancy have an increased risk of having a child with a cleft lip with or without cleft palate, compared to women who did not have diabetes.
• Use of certain medicines―Women who used certain medicines to treat epilepsy, such as topiramate or valproic acid, during the first trimester (the first 3 months) of pregnancy have an increased risk of having a baby with cleft lip with or without cleft palate, compared to women who didn’t take these medicines. https://www.cdc.gov/ncbddd/birthdefects/cleftlip.html

The CDC also recently reported on important findings from research studies about some factors that increase the chance of having a baby with craniosynostosis:

• Certain medications – Women who report using clomiphene citrate (a fertility medication) just before or early in pregnancy are more likely to have a baby with craniosynostosis, compared to women who didn’t take this medicine.

Thyroid disease – Women with thyroid disease or who are treated for thyroid disease while they are pregnant have a higher chance of having an infant with craniosynostosis, compared to women who don’t have thyroid disease.
https://www.cdc.gov/ncbddd/birthdefects/craniosynostosis.html

3. How Does Cleft Affect My Baby?

Depending on the severity of the condition, babies born with cleft lip and/or palate may have difficulty feeding properly. As the child gets older they may have problems speaking clearly. They can also have ear infections and/or hearing difficulties. Problems with their teeth development, hygiene, and rotation around the cleft gap can also occur. Craniosynostosis also depends on the severity of the condition. Most of the babies are otherwise healthy. Some may have developmental delays, intellectual challenges, or other genetic syndromes. This is why it is important to get seen early. Your doctor and care providers with work with you to get you to the various services that will help address these needs for your baby, as well as their development into childhood and adulthood.

4. What Should We Do If Our Baby Is Diagnosed With A Cleft Lip, Cleft Palate Or Craniosynostosis?

Babies born with craniofacial differences will need treatment by a team of specialists who work together. They are referred to as a cleft team or craniofacial team. Many families find it helpful to meet with this team of specialists before the baby is born or shortly after the birth.

The specialists on the cleft team work together to plan all aspects of treatment and are active partners on the team. One of the goals of this approach is to reduce stress on families, allowing them to focus on other life tasks. When meeting with the cleft team, be sure to ask all your questions or to ask for further explanations if something is unclear.

To find a cleft team in your area, visit the ACPA Family Services website at www.cleftline.org.
A surgeon on the team will usually recommend closing a cleft lip through surgery during the first few months of life. Palate surgery generally takes place several months later. A baby born with a cleft palate will often undergo additional planned surgeries throughout childhood and sometimes into early adulthood. The team will determine the exact timing of these procedures.

5. How Do Parents Feel When They Learn About Their Child’s Cleft Or Craniofacial Difference?

Most parents express a wide range of emotions. It is perfectly normal to have a range of feelings when you learn the news of your child’s cleft lip and/or palate, craniosynostosis, or other congenital difference. Some families find out during an ultrasound and others find out when the baby is born. Many parents, and particularly mothers, report feeling anxiety, anger, guilt, and grief. Those emotions are often mixed in with joy, love, and excitement, too. So confusion is a common concern expressed by many parents.

There are several resources available to help you and your family through this difficult time. Many families have found family support groups to be very helpful. A member of the cleft treatment team can also connect you with a mental health professional to help during the difficult time of the pregnancy or after delivery. Some treatment teams also offer parent support groups. These groups have many benefits. Talking with others’ children and parents can also help you cope and realize that you are not alone.

6. How Will We Pay For My Baby’s Surgeries And Ongoing Treatment And Care?

Health insurance usually pays for all or part of cleft treatment. Additional financial assistance may be available from an agency in your state or from other resources. Ask your provider or cleft team for information about funding sources in your area. The pdf at the following link will serve as a guide to many services that provide funding: https://acpa-cpf.org/wp-content/uploads/2018/05/ACPA-Financial-Assistance-2017.pdf

7. How Do We Tell Family And Friends About Our Baby’s Cleft Or Craniofacial Condition?

Before you share the news about your baby with anyone, be sure to consider your care first and foremost. You may need to give yourself time to process your own emotions. Speaking with your healthcare provider first can arm you with information that makes it easier to share the news with family, friends, and loved ones. The support of friends and family will likely be very important during your child’s treatment journey and could provide a positive effect as the child grows.

There are a multitude of resources for families with children who are born with cleft and craniofacial differences. One of the most abundant resources is the American Cleft Palate – Craniofacial Association (ACPA). It is a privilege for me to serve as the Managing Editor for the Learning Resource Committee of the ACPA, which is the committee that develops educational materials for patients and families with collaborations from many top-notch specialists nationally and internationally. I have presented some of this material in addition to other resources in this article, but this is not the end but rather a beginning. You can continue to explore the rich range of educational information at: https://acpa-cpf.org/