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Treatment for craniofacial microsomia (CFM) depends on your child's age and how much they are affected. Because your child's face grows along with your child, the timing of the treatments is very important.

For instance, performing some kinds of jaw surgery when the jaw is not finished growing will result in a jaw that looks good at first, but may need to be operated on again when growth is complete.

Your doctors will recommend treatment techniques and timing based on your child's needs.

Watch a slideshow that demonstrates how distraction osteogenesis was used for a child born with bilateral craniofacial microsomia.

Craniofacial Microsomia Treatment Options

Below is a list of medical problems that your child may have. Addressing each medical problem may involve a number of specialists. Not every child with CFM will have problems in all of these areas.

A special plan and group of doctors will be assigned to your family based on your child's needs.

Ears

Skin tags are tiny skin protrusions, and may have a small narrow stalk connecting the skin bump to the surface of the skin. They are usually painless and do not grow faster than the rest of the face.

If your child has skin tags, you will have the opportunity to talk about whether to have them removed.

By the time your child is 6 to 8 years old, the ears have almost reached their adult size. So, most times if your child needs ear surgery, the first surgery is done after 6 years of age.

Some families choose to do nothing. For other children, the difference in their ear shape is bothersome and they choose to have surgery.

Most surgeries to improve ear shape require at least three operations over a period of time. Your doctor may show you pictures of other children who have had ear reconstruction. The ear looks better after the surgeries but it will not look completely normal.

Another way of treating an abnormally shaped ear is to make an artificial or prosthetic ear. This approach also requires several surgical procedures. This is a way to make a normal-looking ear that matches the other ear.

Although prosthetic ears look normal, they need to be removed, and the area needs to be cleaned, once a day.

Face

For babies who have cleft lip, a surgical repair is most often performed at 3 to 4 months of age. If your child has cleft palate, our surgeons will talk with you about repairing the palate, usually at about 1 year of age.

Babies with epibulbar dermoid (a pinkish-white growth on the eye) will be referred to the ophthalmologist to check for other differences in the eye. We will monitor the growth on the eye to make sure it does not interfere with your child's sight.

Some children with CFM have facial palsy (weakness in the face caused by poor function of facial nerves). Many children with facial palsy improve in the first few years of life.

If your child has severe problems with facial movement, your team will include specialists from our Facial Reanimation Clinic to determine if we can offer surgical treatments to improve facial movement.

Children with macrostomia (wide mouth) need surgery to make a complete ring of muscle around their mouth. The before and after pictures below demonstrate this process.

Before and after pictures: Bilateral macrostomia repair. 

macrostomia_beforeafter 
BEFORE (Left): If the muscles in the corner of your baby’s mouth did not form, their mouth will be wider than normal (macrostomia). This can make feeding and speaking hard. This 9-month-old is missing muscles on both sides of her mouth. To correct this, surgeons make a ring of muscle that connects the corners using other muscles around the mouth. They also bring the corners of the mouth closer together.

AFTER (Right): Surgeons carefully cut into the skin, the muscle and the tissue inside the mouth. Then, they move and connect these layers. In the corner of the mouth, they bring the upper muscle down over the lower muscle to give the mouth a normal shape. They use a small zigzag incision (cut), which helps to hide any scars. This repair allows your baby to use their mouth to eat and speak, and it creates a natural look.

Feeding and breathing

Babies with CFM may have a small jaw or a cleft palate and your doctor will pay special attention to your child's breathing and feeding during infancy.

Because of differences in the face, some babies may have difficulty with breast and bottle-feeding. It will be important to make sure that your baby is gaining weight appropriately. A dietitian may see you in the clinic to review your child's diet.

If breathing is a problem, your doctors will discuss the options available to manage and correct the cause, such as positioning devices, tubes and jaw advancement procedures.

In some cases tracheostomy (a breathing tube placed in the windpipe) is required.

Hearing

All newborns should have a hearing screening, usually performed in the birth hospital or within a few days of birth.

If problems are found, further testing will be done. More detailed hearing testing will be performed in the first few years of your child's life.

An audiologist (hearing specialist trained to test hearing in infants and children) will perform different types of hearing tests as your child grows, based on hearing status and ear health.

Our otolaryngologist (ear, nose and throat doctor) and audiologist will talk with you and your child about hearing management. This includes issues such as the best place for your child to sit in the school classroom, whether hearing aids are needed and how to prevent further hearing loss.

Your child may need a computerized tomography (CT) scan at about 4 years old, when the growth of the ear is nearly complete, to examine their middle and inner ear structures.

Most times, children do not require any special medicine to help them sleep during the scan. CT scans are used to find out whether surgery to restore hearing is likely to be successful.

Jaw and teeth

Good oral hygiene is important for all children, but for especially those with craniofacial disorders.

A dentist and/or orthodontist will examine your child to assess general dental health, to check for crowding of the teeth, and to check how well the upper and lower jaws fit together.

Some children with CFM have some missing teeth, and we will discuss treatment for this with you.

Some children may need a dental appliance or braces to provide the best dental appearance and function.

If your child has a small jawbone, your doctor may recommend a bone graft (an extra piece of bone) to lengthen the jaw or to make a new jaw joint. We first consider this option when your child is between 4 and 7 years old.

Distraction osteogenesis can be used to increase the size of a child's lower jaw with better results and less surgeries than older methods.

The slideshow below demonstrates this process.

 

  • Slide 01 - The young child in this example was born with bilateral hemifacial microsomia, with his right side more affected than the left. 
  • Slide 02 - A break (osteotomy) is made on both sides of the jaw and a mechanical device called an external distractor is placed during an operation. 
  • Slide 03 - As the distractor is slowly opened at one millimeter a day during the month after the surgery, the gaps in the bone increase in size. After the new lower jaw has been enlarged to the correct size, new bone forms spontaneously in the gaps 
  • Slide 04 - The child now has a larger and symmetric jaw made of bone that his body grew by itself. This larger jaw will help breathing and chewing. 
 

The orthodontists and surgical members of the team will discuss these potential needs as your child's care progresses.

Speech

Some children with CFM have differences in the muscles in the back of the mouth and this can lead to differences in the way your child speaks (called velopharyngeal insufficiency).

If you or your doctors have concerns about your child's speech, your child will be referred to a speech pathologist.

Kidneys

Children with CFM have a 10 to 15% chance of having kidney problems. We recommend that your child have a renal ultrasound.

We are looking to make sure that the kidneys were formed normally. If your child has a normal ultrasound, they will not need another one in the future. This ultrasound is very easy and usually takes less than 20 minutes.

Cervical spine

The craniofacial pediatrician will order X-rays of the cervical spine (the top part of the spine) to look for differences in the way that the bones fit together. These differences in the spine occur in 10 to 15% of children with CFM.

We will take these X-rays when the bones are well formed, when your child is at least 2 years old. Your pediatrician may recommend further studies if the X-rays show changes in your child. This study is easy for most children.

Heart

It is rare for children with CFM to have problems with their heart. Your doctor may decide that your child needs an echocardiogram (ultrasound picture of the heart) to check for abnormalities.

This procedure is similar to the renal ultrasound and does not require needle pokes or medicine.

Who Treats This at Seattle Children's?

Should your child see a doctor?

Find out by selecting your child’s symptom or health condition in the list below:

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