Alaska’s Cleft Lip and Palate Program: For Parents
Alaska’s Cleft Lip and Palate Program services all residents of the state of Alaska, whether they are Alaska Native or non-Native people. As the only state-endorsed cleft lip and palate provider, it is important to understand what will happen at your visits, as well as what it will mean for the future. This webpage is meant only as a reference. Any questions you may have regarding treatment or long-term care should be brought to your provider or the cleft lip and palate team.
Having a child with a cleft lip or palate can seem scary at first. Alaska’s Cleft Lip and Palate Program is here to help you and your family through the medical procedures and processes that lie ahead. With proper treatment and care, a cleft lip or palate will not interfere with your child’s ability to live a long and happy life.
Frequently Asked Questions
How will I know if my baby has a cleft lip or palate?
Many cleft lip and palate concerns are identified before the baby is born, however, cleft lips and palates have many appearances and may not be diagnosed until after birth. In these cases, signs may include facial difference, feeding difficulty, including fluid coming out of the nose, and failure to gain weight.
My baby has a cleft lip or palate. Now what?
When an OBGYN provider identifies a cleft lip or palate concern, the medical director of the facility where you are being seen will be notified. After the medical director confirms the diagnosis of a cleft lip or palate, they will write a referral to the Alaska Cleft Lip and Palate Program at SCF. Once that referral is received, a member of the team will reach out to meet with you and discuss what will happen after your baby is born.
What happens after my baby is born?
Congratulations! Being a new parent is an exciting time, but can also be stressful if your baby is born with a cleft lip or palate. Alaska’s Cleft Lip and Palate Program at SCF is here to help with what will happen next.
Once your baby is born, a doctor from the team will check in at the hospital to ensure your baby is able to feed properly. The doctor will also check in with you to ensure you are feeling ready to help your baby grow and take care of your child.
Every child is different, and the severity of the cleft will affect the course of action the doctor recommends. By the time your baby is born, you should already have a relationship with an Alaska Cleft Lip and Palate Program team member who will help guide you through the next steps.
What happens at a team evaluation?
Team evaluations happen at the Alaska Cleft Lip and Palate Program at SCF six times a year, or about every two months. If you and your doctor have not already scheduled the first corrective surgery to address your baby’s cleft, this will occur at the team evaluation. During these evaluations, you will also meet with an audiologist, a speech language pathologist, an ear, nose and throat professional, a plastic surgeon, a nutritionist, pediatrician, pediatric dentist, and the parent navigator. Some families may meet with an oral surgeon and orthodontist, and a behavioral health consultant.
At the first team evaluation, you and your providers will set a long-term plan of treatment. Treatment plans generally include a rough time frame for surgeries, suggestions for therapy including speech therapy, suggestions for pediatric follow-up, and recommendations for further interval evaluations such as for hearing. We will also establish a time frame for re-evaluation by the entire multidisciplinary cleft lip and palate team.
What do I do after a team evaluation?
Once the team evaluation has been completed, all the recommendations will be sent to your primary care provider. It will be up to you and them to decide what happens next.
How many surgeries will my baby need?
The number of surgeries depends in large part on what is affected by the cleft. For instance, children with a complete cleft lip and palate typically require surgery to repair the lip between 4-6 months of age, a palate repair between 9-16 months of age, and bone grafting to the gum line between 7-9 year of age. Some of these children will require revision of the lip for poor scarring and additional surgical procedures to help with speech. Depending on the severity of the cleft and on growth of the child, jaw surgery (orthognathic surgery) may be required to modify the shape of the face and better align the teeth around 17-22 years of age. Septorhinoplasty (nose revision surgery) to correct any lingering nasal deformities is also performed after the face has matured, usually happens between 16-22 years of age
What does a team evaluation look like?
Team evaluations are a typically a two-day process, although some may be as short as one morning. Generally, parents can expect the following schedule for their visits:
Day One Morning:
- Ear, nose and throat visit
- Audiology visit
- Speech language pathologist visit
Day One Afternoon:
- Pediatric Dentist
- Oral Surgeon
- Surgical team and long-term planning
Due to the difference in attendance at each clinic, the day-one morning and afternoon sessions may be reversed. Day two visits will vary in length depending on the severity of the cleft.
How do I get help if my baby isn’t eating?
Your family provider can refer you to a feeding specialist in your community. Feeding evaluations also occur as part of your team visit if reported as an ongoing concern by your or your family provider.
What if my child has hearing loss?
If your child is found to have hearing loss, treatment in the form of a hearing aid or aids may be recommended. If hearing aids are not covered by your insurance, they will typically be covered by Medicaid. Fitting hearing aids on your child will be performed by an audiologist.
Billing and Doctor Frequently Asked Questions
I’m not Alaska Native. What does this mean for me?
The Alaska Cleft Lip and Palate Program at SCF is a state-endorsed program, meaning it serves any resident of Alaska, both Alaska Native and non-Native people. There are some billing differences, and options regarding your home provider, but all of the services provided by the program are available to you as well.
What about billing and payment?
Alaska’s Cleft Lip and Palate Program at SCF accepts all major insurance as well as Medicaid and Denali Kidare. When you arrive at the program, you will provide your insurance information. The program will bill your insurance, just as a private provider would. As with any other provider, families are responsible for any co-pays, deductibles, and out-of-pocket costs associated with their insurance. Please note that facilities fees are always out-of-pocket.
How does this affect my relationship with my normal provider?
If you are an SCF customer-owner, the information will be seamlessly available to your primary care team.
If you an Alaska Native family from outside of Anchorage, all of your information and records can easily be sent to your hub location for follow-ups and visits in between the annual team evaluation.
If you are a non-Native family, there are several options for you:
- You can choose to have Alaska Native Medical Center as your home clinic for all your child’s needs regarding their cleft lip and palate.
- You can choose to have ANMC as your home clinic for all specialty needs regarding their cleft lip and palate.
- You can maintain your current home clinic, with the program aiding only in the team evaluation and other areas you choose.
Who will my child be seeing?
The Alaska’s Cleft Lip and Palate Program team has worked with Alaska’s cleft lip and palate customers for more than 20 years. They are the best doctors available in Alaska, and the program maintains a relationship with the Seattle Children’s Hospital for cases that require special care.
To read about the team who works in the Cleft Lip and Palate Program, click here to go to the biography page.
What is a sliding scale and how do I apply?
A sliding fee scale means you pay a different amount based on the number of people in your home and your annual income. To see if you qualify, complete the form and bring it to your appointment. You can download the form by clicking here.