July is Cleft and Craniofacial Awareness and Prevention Month
July is National Cleft and Craniofacial Awareness & Prevention Month. It is estimated that 2,650 babies are born with cleft palate and 4,440 babies are born with a cleft lip in the United States each year. Craniofacial defects such as cleft lip and cleft palate are among the most common of all birth defects and can occur as an isolated condition, or one component of an inherited disease or syndrome.
What Is Cleft Lip?
A cleft lip can range from a little notch in the coloured part of the lip to a complete separation of the upper lip which can extend up and into the nose. This can affect one side of the mouth (unilateral) or both sides (bilateral), and can be complete (meaning the cleft goes up into the nose) or incomplete.
A cleft lip can also affect the gum where the teeth come through. Again, this can range from a small notch to a complete separation of the gum into two parts.
Children with a cleft lip also can have a cleft palate.
What Is a Cleft Palate?
A cleft palate is a gap in the roof of the mouth. A cleft palate can occur if the tissue that makes up the roof of the mouth does not join completely during pregnancy. Both the front (hard palate) and back (soft palate) may be affected, or only part of the palate.
Other Common Craniofacial Abnormalities
Craniosynostosis. A condition in which the sutures (soft spots) in the skull of an infant close too early. This causes problems with normal brain and skull growth. Premature closure of the sutures may also cause the pressure inside of the head.
Hemifacial microsomia. A condition in which the tissues on one side of the face are underdeveloped. This mostly affects the areas of the ears, mouth, and jaw. Both sides of the face can be affected and may involve the skull and the face.
Vascular malformation. A birthmark or growth, present at birth, that is composed of blood vessels. It can cause functional or aesthetic problems. Vascular malformations may involve multiple body systems. There are several different types of malformations, named for the type of blood vessel mostly affected. Vascular malformations are also known as lymphangiomas, arteriovenous malformations, and vascular gigantism.
Hemangioma. An abnormally growing blood vessel in the skin that may be present at birth or appear in the first months after birth.
Deformational (or positional) plagiocephaly. A misshapen (asymmetrical) shape of the head from repeated pressure to the same area of the head.
Problems Associated with Cleft Lip and Cleft Palate
Children with an orofacial cleft may experience:
- Problems with eating/feeding
- Speech development
- Higher susceptibility to ear infections
- Hearing difficulties
- Growth and development
- Dental issues
- Self-esteem and self-confidence
Most medical professionals agree that there is no single factor that causes these types of craniofacial abnormalities, but many factors, genetic and environmental, may contribute to their development. The causes of orofacial clefts are unknown in many cases. In some cases, babies inherit a gene that makes them more likely to develop a cleft, and then an environmental trigger actually causes the cleft to occur.
The CDC has identified some factors that could increase the chances of a baby developing a cleft lip or cleft palate, including:
- Family history. Parents with a family history of cleft lip or cleft palate face a higher risk of having a baby with a cleft.
- Exposure to certain substances during pregnancy. Cleft lip and cleft palate may be more likely to occur in pregnant women who smoke, drink alcohol or take certain medications.
- Diabetes – Women diagnosed with diabetes before pregnancy have an increased risk of having a child with a cleft.
Cleft Lip and Palate
- Males are more likely to have a cleft lip with or without cleft palate.
- Cleft palate without cleft lip is more common in females.
- Cleft lip and palate are reportedly most common in Native Americans (United States).
- Cleft lip and palate are reportedly least common in African-Americans (United States).
Management and Treatment
There are services and treatments available for children with orofacial clefts, and may differ with the severity of the cleft. Manage and treating orofacial clefts may be dependent on factors such as:
- Specific needs
- The presence of associated syndromes
- Other birth defects
With treatment, most kids with cleft lip and palate are treated successfully. Sharing awareness of cleft and craniofacial issues supports prevention and treatment efforts and also supports the kids and families who are affected by them.
Support and Educational Resources:
- American Cleft Palate-Craniofacial Association, ACPA
- Cleft Palate Foundation, CPF
- Faces National Craniofacial Association
- National Cleft & Craniofacial Awareness & Prevention Month (NCCAPM) Find participating organizations.
- Overview of Craniofacial Anomalies (University of Rochester Medical Center)
- Prevalence of Cleft Lip & Cleft Palate (National Institute of Dental and Craniofacial Research)
- What is Cleft Lip & Palate? Cleft Lip and Palate Association CLAPA
- Cleft Palate With Cleft Lip (KidsHealth from Nemours)
- Cleft Lip and Cleft Palate (Mayo Clinic)
CoachArt is a nonprofit organization offering free lessons in arts and athletics to kids impacted by chronic illness, including craniofacial abnormalities. Watch Missaira’s story of how she learned to play piano and violin at CoachArt, and is now a CoachArt volunteer, teaching piano and violin to other kids impacted by chronic illness.
Missaira Learned Piano at CoachArt. Now She’s Teaching Others!
MAKING A DIFFERENCE FOR FAMILIES IMPACTED BY CHILDHOOD CHRONIC ILLNESS
Since 2001, CoachArt has matched volunteer coaches with students for one-on-one or group lessons in arts and athletics. Our vision is that one day every family impacted by chronic illness will be connected to a community of support and an opportunity to learn and grow together.
CoachArt offers free art and athletic lessons to chronically ill children and their siblings between the ages of 5-18 in Los Angeles, the San Francisco Bay Area, and San Diego. If your child has been diagnosed with a chronic condition, we invite you to fill out a student eligibility form or get in touch to learn if CoachArt is right for your child.
WAYS TO HELP
Do you have an artistic or athletic skill you would like to share with a child impacted by chronic illness? Become a CoachArt Volunteer.
Learn how you can get involved with CoachArt to help kids impacted by chronic illness. Visit coachart.org/get-involved.