Parents or caregivers of a child with a cleft lip and/or palate have a unique set of medical and financial issues. Stone Soup Group is here to help walk families through the process and provide support throughout the years and stages. Because this is a specialized condition that requires medical attention, clinics have been created to improve access to care for children. For more information about clinics, feeding supplies or other resources in Alaska contact a Parent Navigator.

What is a cleft lip or cleft palate?

These are openings in the lip and/or roof of the mouth. They are a result of incomplete development prior to birth. Development specific to the lip and palate occurs within the first three months of pregnancy.

What causes a cleft lip/palate?

The short answer is… we don’t know, but it is most likely not because of something you did and it could not have been prevented. One in 700 babies are diagnosed with a cleft lip and/or cleft palate. Scientists and health care professionals think it may be a combination of genetic and environmental factors. Cleft lips and/or palates may be a symptom in combination with another diagnosis. Your health care provider will check for these other possibilities.

What are the concerns or effects of a cleft lip/palate?

Difficulty eating – The opening in the mouth makes it difficult for food and liquid to pass on to stomach rather than be rerouted to the nose. Stone Soup Group has supplies (bottles and nipples) specifically designed to help redirect the flow of food to the stomach. Contact us for more information.
Dental – Teeth may vary in number (extra or less), may be displaced or more prone to cavities. Most of these issues can be corrected through oral surgery but some may require additional attention. See the Stone Soup Group Oral Health Packet for more information on home health care.
Hearing loss – Fluid buildup in the ears can cause ear infections. If left untreated, hearing loss can occur. To mitigate the possibility of this, draining tubes may be placed in a child’s ears.
Speech – If the cleft clip/palate is not fully repaired through surgery and individual may have difficulty speaking. Their voice may sound muted or nailed. Speech language therapists can assist with this.

Can you fix a cleft lip/palate?

Typically a cleft lip and/or cleft palate can be repaired surgically within the child’s first year. The timeframe for repairs will depend on other factors affecting the child’s health. The doctor who will perform the surgery will discuss options with you.

Who treats a cleft lip/palate? Are there specialists I’ll work with?

There are a number of medical professionals who may be involved in the treatment of cleft lips and/or cleft palates. Below is just a short list. You can find a local provider by asking for a referral, on our website or from a basic online search.