Frequently asked questions

What is a cleft lip/cleft palate?

The word "cleft" means split. Therefore, a cleft lip is a split of the lip tissues, and a cleft palate is an opening in the roof of the mouth. A cleft lip forms early during development when the lip tissues fail to join properly. This may occur on one side, resulting in a “unilateral” cleft, or on both sides, resulting in a “bilateral,” or double cleft.

Cleft lip may or may not be accompanied by a cleft palate, which occurs slightly later in development. A cleft palate may also be seen without a cleft lip.

What causes cleft lip and palate?

A cleft occurs when developing tissues fail to join properly. Clefting is thought to be “multi-factorial,” in that there appears to be no single cause. Genetics can play a role, as well as environmental factors during the pregnancy, such as certain medications.

Can cleft lip and palate be identified before birth?

Yes, in a majority of cases where a cleft lip is involved, the abnormality can be detected on a Level II (typically 20-week) ultrasound scan.

We welcome families to our Cleft and Craniofacial Clinic who have received a prenatal diagnosis of cleft. Early visits with our team can help put you at ease regarding the diagnosis and help to answer important questions prior to birth. Studies have shown that these meetings can significantly reduce anxiety for families. We are here to help!

Where can I get answers to more of my questions about cleft lip and palate treatment?

• Cleft Palate Foundation
• American Academy of Pediatrics Healthy Children
• KidsHealth

What causes an abnormal head shape?

An abnormal head shape is usually the result of one of two things:

• Positional molding (i.e., plagiocephaly or brachycephaly)
• Craniosynostosis: the premature fusion of skull bones

When should my child’s head shape be evaluated?

We recommend you seek an appointment as soon as you realize there is a problem. While it is not uncommon to initially see a head shape that is not perfectly round right after birth due to the birth process itself (especially with vaginal deliveries and the use of forceps or vacuum), abnormal head shapes that persist beyond 2 months of age warrant examination.

We encourage patients to be seen at this early time period (between 2-4 months of age) to accurately diagnose the problem. Our Contact Center staff understands that this is a time-sensitive diagnosis and that treatment plans should not be delayed. Therefore, you should never have to wait more than a few weeks to be seen in our Head Shape Clinic.

You may ask to be connected directly with a member of our team if you have any difficulties in making an appointment within this time frame.

When does plagiocephaly require orthotic helmet therapy?

We typically try to reserve orthotic helmet therapy as a last resort. Whether or not your child will need a helmet depends on both age and severity. If we catch the positional molding problems early enough, roughly three-quarters of the children will be able to achieve normal symmetry with repositioning techniques and physical therapy alone. Thus, it is important that you get an evaluation at an early age.

Why do positional molding problems occur?

Positional head shape problems are a result of babies being weak and spending too much time on their backs and in devices. In a large percentage of cases, the baby may also have a head-turning preference to one side (i.e., torticollis), which continues to make the flattening on one side worse.

It is important that you begin encouraging tummy time with your infant starting the day you bring him/her home from the hospital. Ideally, we like to see infants on their tummies or some type of tummy time holding position for half of the time the infant is awake. We also recommend avoiding having your child spend excessive time in devices that may slow the development of core muscle strength (e.g., infant sitting chairs, jumpers, walkers, and bouncers).

What is a STARscan?

A STARscan is a laser-guided scan system that allows us to create a 3D image of your child's head shape using multiple data points. This scan does not involve any radiation and takes about 2 seconds to perform.

The STARscan is used to determine the severity of the initial head shape deformity and track changes over time. The STARscan data may also be submitted to your insurance company to justify the need for an orthotic molding helmet.

How long will my baby have to wear a helmet if necessary?

If recommended for your infant, the orthotic molding helmet will be worn 23 hours a day for several months. Regular follow-up appointments will be scheduled with our team to track your infant’s progress in the helmet.

The duration of helmet wear will vary for each infant depending on the age the helmet is started and the severity of the deformity.

Is it safe for my child to undergo anesthesia?

This will be discussed in detail at your office visit. At Advocate Children’s Hospital, we work with an outstanding group of Pediatric Anesthesiologists with extensive experience and training. You can be assured that your child will be in the best of hands for his/her surgery.

My child’s surgery is scheduled. Now what do I do?

• Please read through the Surgery Packet given to you at your office visit.
• If you were asked to see your pediatrician for a pre-operative History and Physical, please arrange to have this done within 1-2 weeks of the anticipated surgery date.
• If your child is under the age of 6 months, he/she will need a blood draw (CBC) as outlined in the Surgery Packet.
• By 7 p.m. on the business day prior to surgery, the hospital will give you a call to confirm the time you need to arrive. Please plan to come early (generally 1 hour before your scheduled time). Typically, infants are scheduled for morning slots, whereas older children may be later in the afternoon.
• When the hospital calls to confirm the time of surgery, they will also give you instructions regarding food and drink before surgery. Generally, this is as follows:
  • Stop clear liquids 4 hours prior to arrival (includes water, apple juice, and 7-Up/Sprite).
  • Stop breast milk 4 hours prior to arrival for children 2 years old and younger.
  • Stop formula 6 hours prior to arrival for children 2 years and younger.
  • Stop solid foods at midnight.
• Avoid aspirin or ibuprofen-containing products for at least 1 week prior to surgery. Also, please coordinate with your pediatrician’s office so that immunizations are not given within 2 weeks of the surgery date.

Will there be stitches that have to be removed after surgery?

• This depends on the particular surgery involved. Your surgeon will let you know ahead of time whether the stitches will dissolve or whether they will need to be removed and when. In the majority of cases, dissolving sutures are used.

What kind of foods can my child eat when a “puree diet” or “soft diet” is recommended?

• Typically, these diets are recommended when a portion or all of your child’s surgery is performed inside the mouth or involves the jaws. These diets are suggested while the tissues are still healing. During this time period, no foods that require active chewing should be eaten.

How long after surgery should my child wait before swimming?

• We typically recommend keeping your child out of a pool, lake, or ocean for 3 weeks after surgery. This is around the time that all stitches have been removed or dissolved.

What should I do for my child’s scar?

• Scar care may begin 2-3 weeks after surgery once Dr. Vicari or Dr. Steinberg has seen your child back in the office for follow-up. Instructions regarding scar care, including massage and topical product application, will be given to you at your follow-up appointment by your surgeon.
• Because healing tissue is more susceptible to sun damage, sunscreen application is advised for your child’s scar. Along with scar care, this will be discussed at the time of your follow-up visit.

Will my child’s surgery be covered by insurance?

• Some insurance companies offer full coverage for a wide range of procedures, and others do not. We will work with you to provide all the information necessary for your insurance company.

Will you assist us with obtaining pre-authorization from our insurance company?

• Dr. Vicari’s scheduler, Julia Sanchez, will assist you in obtaining pre-authorization for surgery once a date is set.

Why aren’t STARscans covered by insurance?

• Unfortunately, there is no procedural billing code for STARscans. As a result, we are unable to submit these charges to insurance companies. There is a cost of $300 for the first scan and $50 for any subsequent scans. This does not mean that you cannot submit a claim to your insurance company to request reimbursement.